Testicular Cancer Chronology


I had a particularly rough time with chemotherapy, as I encountered some of the rarer side effects. Most testicular cancer patients have a much easier experience with chemotherapy. Nevertheless, this cancer diary will contain a lot of useful information, even for patients who aren't being treated with chemotherapy.

Age at diagnosis: 36 years old

  • 05-01-2003: Testicular mass detected.
  • 05-16-2003: Ultrasound confirms testicular cancer.
  • 05-21-2003: Orchiectomy.
  • 05-26-2003: Pathology identifies the cancer as pure seminoma.
  • 05-30-2003: CT scan identifies three nodal masses, indicating stage III.
  • 06-13-2003: Post-orchiectomy semen analysis normal, with sperm concentration of 45 million per ml, forward progression 67%, activity 2-2++, round cells 0-1 million/ml, and agglutination 0%.
  • 06-17-2003: First day of first cycle of 3BEP chemotherapy.
  • 06-23-2003 through 06-29-2003: Hospitalized for severe nausea and abdominal pain.
  • 06-24-2003: ERCP and x-rays identify pancreatitis and gall stones.
  • 06-25-2003: Gall bladder removed laparascopically.
  • 07-02-2003: PET scan was inconclusive because the bone marrow responded very strongly to the neupogen, leading to the possibility of a false positive.
  • 07-14-2003: First day of second cycle of 3BEP chemotherapy.
  • 07-22-2003 through 07-24-2003: Hospitalized for severe nausea, severe abdominal pain and bone pain.
  • 08-01-2003: Diabetes diagnosis, likely caused by pancreatitis and decadron.
  • 08-05-2003: First day of third cycle of 3BEP chemotherapy.
  • 08-07-2003 through 08-12-2003: Hospitalized in an attempt to control the nausea and abdominal pain before it occurs.
  • 08-21-2003: Last day of chemotherapy.
  • 09-09-2003: Second CT scan shows that the nodal mass adjacent to my heart has disappeared and the other two nodal masses have decreased in size. The larger of the two has shrunk from 3 cm to 1 cm.
  • 10-08-2003: Second PET scan shows no evidence of FDG avid malignancy.
  • 10-16-2003: Surveillance phase begins.
  • 11-13-2003: CT scan shows possible metastases to the lower right lobe of the lung.
  • 11-19-2003: PET scan followup to the CT scan shows no evidence of disease.
  • 01-21-2004: Testicular Ultrasound shows contralateral testicle unchanged.
  • 01-21-2004: Tumor markers are all normal.
  • 01-21-2004: CT scan shows no sign of metastatic disease or disease progression.
  • 03-23-2004: Tumor markers are all normal.
  • 03-23-2004: CT scan shows no sign of metastatic disease.
  • 07-06-2004: CT scan shows no sign of metastatic disease.
  • 07-06-2004: Semi-annual ultrasound shows contralateral testicle unchanged.
  • 07-16-2004: One year post-chemotherapy semen analysis subfertile, with sperm concentration of 16 million per ml, forward progression 69%, activity 2+-2++, round cells 0-1 million/ml, and agglutination 0%.
  • 11-08-2004: Tumor markers are all normal.
  • 11-08-2004: CT scan shows no sign of metastatic disease.
  • 01-06-2005: Semi-annual ultrasound shows contralateral testicle unchanged.
  • 03-14-2005: CT scan shows no sign of metastatic disease.
  • 07-26-2005: Semi-annual ultrasound shows contralateral testicle unchanged.
  • 09-19-2005: CT scan shows no sign of metastatic disease. Incidental findings of gynecomastia.
  • 12-22-2005: Semi-annual ultrasound shows contralateral testicle unchanged.
  • 02-13-2006: CT scan shows no sign of metastatic disease.
  • 08-07-2006: Tumor markers are all normal.
  • 08-07-2006: CT scan shows no sign of metastatic disease.
  • 08-08-2006: Semi-annual ultrasound shows contralateral testicle unchanged.
  • 12-21-2006: Tumor markers are all normal.
  • 12-21-2006: CT scan shows no sign of metastatic disease. Possible nonfunctional neuroendocrine tumor of the pancreas. Same 1 cm mass was apparently present on my original staging CT scan, but missed by the radiologist.
  • 1-4-2007: Abdominal MRI confirms the presence of a 1 cm mass at the tail of the pancreas. The MRI rules out adenocarcinoma of the pancreas, but cannot differentiate between neuroendocrine tumor of the pancreas and metastasis from the testicular cancer.
  • 2-19-2007: Semi-annual ultrasound shows contralateral testicle unchanged.
  • 2-19-2007: Total testosterone levels below normal, but free testosterone, FSH and LH all normal.
  • 3-9-2007: PET-CT scan shows no sign of FDG avid malignancy.
  • 5-14-2007: EUS-FNA biopsy of mass at tail of pancreas.
  • 6-21-2007: Dedicated CT scan of the pancreas finds a second 1.5 cm mass in the body of the pancreas in addition to the 1.0 cm mass in the tail of the pancreas. Review of prior CT scans finds the second mass present as well and stable in size.
  • 7-24-2007: Semi-annual ultrasound shows contralateral testicle unchanged.
  • 7-26-2007: CT scan shows no sign of metastatic disease. Two pancreatic lesions are unchanged in size.
  • 8-8-2007: Second EUS-FNA biopsy of mass at tail of pancreas.
  • 7-24-2007: Semi-annual ultrasound shows contralateral testicle unchanged. Urinalysis shows glucosuria.
  • 12-20-2007: CT scan shows no sign of metastatic disease. The tail lesion in the pancreas is unchanged in size. The radiologist did not remark on the body lesion. Tumor markers all normal.
  • 1-25-2008: Semi-annual ultrasound shows contralateral testicle unchanged. Normal PSA. Total testosterone again deficient.
  • 2-28-2008: Bone density test (DEXA) shows spinal cord density to be osteopenic. Left hip is normal.
  • 7-21-2008: CT scan shows no sign of metastatic disease. The tail lesion in the pancreas is unchanged in size. The radiologist did not remark on the body lesion. Tumor markers all normal (including both testicular and pancreatic tumor markers).
  • 7/30/08: Semi-annual ultrasound shows contralateral testicle unchanged. Urinalysis shows glucosuria.

Detailed Chronology

May 1, 2003
I noticed some anomalies involving my right testicle during my monthly testicular self-exam:

  • My right testicle was swollen, about twice the volume of my left testicle.

  • My right testicle felt hard.

  • There was a testicular mass above the right testicle and epididymis, about the size of a hazelnut. This testicular mass also felt hard.

  • My scrotal sack felt "full" on the right side, presumably because there was more "stuff" in it.

I wasn't in any pain.

I spent a few hours doing some research on the web, and found only four possible causes of a testicular mass: epididymo-orchitis (infection), spermatocele (outpouching of tissue around the epididymis), hydrocele (fluid around the testicle), and testicular cancer. My symptoms were most consistent with the latter.

May 3, 2003
I told my wife about my suspicions, and that I'd be seeing the doctor on Monday. The timing is rather bad, coming about two weeks after the birth of my son. My wife still has severe back pain from the delivery, and is confined more or less to the nursery until she recovers. Currently, I'm waiting on her hand and foot, since she can't shuffle more than 15 feet and can't go up and down stairs. The doctor prescribed anti-inflammatory drugs for her, so hopefully she'll recover by the time we have to switch roles.

May 5, 2003
My doctor confirmed the presence of a testicular mass. He also threw in a prostate exam, finding that my prostate was normal. He had me give urine and blood samples (to test for signs of infection) and scheduled me for a testicular ultrasound on Friday, May 16.

My doctor demonstrated a reluctance to speculate about the diagnosis, beyond stating that it was a testicular mass. Strictly speaking, he should have assumed that it was testicular cancer until proven otherwise, and scheduled the ultrasound with greater urgency. He should have called various hospitals and labs until he found one that could conduct a testicular ultrasound the same day, instead of forcing me to wait two weeks.

In hindsight I probably should have gone to the emergency room instead of my regular doctor. This would have yielded a much quicker diagnosis.

May 16, 2003
By the time of my ultrasound, the testicular mass had doubled in size, and was about the same size as a normal testicle.

The ultrasound is the exact same device they use for looking at a fetus in the womb. They use the same kind of goo too. I took a shower after getting home to get the goo off, since a wet paper towel at the hospital didn't do much good.

During the ultrasound, the technician confirmed that the testicular mass was solid, meaning that it was a tumor. I asked for and received a copy of the ultrasound images, which turns out to have been a very smart move, as I was able to bring them with me when I saw a urologist.

The official report on the ultrasound was not available until mid-morning on Monday, May 19.

May 19, 2003
My doctor called with the results, confirming the presence of a solid tumor. I asked him to fax me a copy of the ultrasound report. In addition to the tumor, the report showed bilateral microlithiasis, something my doctor forgot to mention.

I called and arranged for an appointment to see Dr. Musmanno, a urologist, the same day. Dr. Musmanno confirmed that it was testicular cancer, showing me on the ultrasounds where the tumor had taken over about three-quarters of the testicle. He also indicated that the fact that the tumor and the testicular mass showed varying densities was a potential sign of a non-seminoma.

My urologist said that it was urgent to remove the cancerous tissue within the next 24-48 hours, and scheduled me for an orchiectomy at 9 am on Wednesday, May 21.

I had a new version of my will notarized, along with a healthcare power of attorney and other documents. I had been working on a new will anyway, because of the birth of my son, but the diagnosis gave it a heightened sense of urgency.

May 20, 2003
I went in to the hospital for pre-operative testing. They took blood and urine samples, as well as a chest X-ray. Dr. Musmanno didn't try scheduling me for a CT scan that day, since he didn't want to risk delaying the orchiectomy.

May 21, 2003
My orchiectomy was scheduled for first thing in the morning at West Penn Hospital. My wife drove me there, since I would not be able to drive for three weeks after the operation.

It's kind of interesting that the hospital has only one bathroom with a changing table, and it is too high for most women to use. So my wife changed my son on the floor in the ambulatory surgery waiting room. You'd think that a hospital would have changing tables in more of its bathrooms.

After changing into the hospital gown (actually two gowns, one to cover the front and one to cover the rear), I got onto a gurney in a curtained waiting area. Various nurses and the anesthesiologist came to take my vitals, hook me up to an IV, and ask questions about allergies to medicines and anesthesia. They told me my chest X-rays were clear. Dr. Musmanno also came to see me before the operation.

They gave me a sedative through the IV and wheeled me into the operating room, where they put me under with general anesthesia.

During the orchiectomy they make a three-inch horizontal incision in the abdomen just below the belt line. They use it to remove not only the testicle but also some of the plumbing connected to it. This prevents the cancer from contaminating adjacent tissue, and also allows the pathologist to determine how much the cancer has spread.

One thing doctors never seem to tell you before an operation (shouldn't this be part of informed consent?) is the fact that they will shave off any hair in the operative area. The pubic hair is very prickly as it grows back.

I woke up in the recovery room with a big bandage on my abdomen and a pack of ice. Dr. Musmanno said the procedure went very well, and that the tumor appears to be a seminoma externally. Of course, we won't know for certain until we get the pathology report.

After making sure I could still urinate, they discharged me at 3:15 pm with a prescription for painkillers (Oxycodone). For the next two days I had to keep ice on the incision and scrotum to keep the swelling down, changing the ice every 15-20 minutes. The painkillers weren't very effective, only taking the pain down a notch or two. The bags of ice were much more effective. Since the ice was rather cold, wrapping it in a paper towel helped. The pain and the painkillers interfered with my ability to concentrate.

One thing they should include in the discharge instructions is to avoid laughing. Laughing is excruciatingly painful. My wife gave me a large container of Poppycock, not realizing the humor inherent in the name.

My prescribed pain medication ran out on May 24, 2003. My doctor told me to take extra strength Tylenol when I ran out of the other pain medication. But the Tylenol was completely ineffective at controlling the pain. His other suggestion was to put a bag of ice wrapped over the incision area. This worked, controlling both the pain and the swelling. A bag of frozen peas or corn wrapped in a paper towel worked best, since it could be easily molded to fit the abdomen.

Visually, the scrotum looks much like it did before, only with a little less stuffing. My underwear still fits well.

May 26, 2003
The pathology report found that the tumor was a high grade malignant seminoma with spermatic cord invasion. The tumor involved the testicle, extending into the epididymis and up into the spermatic cord. (The largest tumor dimension was 3.5 cm. The dimensions of the tumor in the testicle was 3.5 x 3.4 x 3.0 cm. In the epididymis the dimensions were 3.0 x 1.7 x 2.0 cm. In the spermatic cord, the dimensions were 1.5 x 1.4 x 1.4 cm.) But it appears to not have gone beyond the spermatic cord, as the spermatic cord margin was free of neoplasm. There was also no sign of neoplasm in the blood vessels or lymph vessels next to the tumor, nor in the tunica vaginalis (the outer layer surrounding the testicle).

May 27, 2003
I find it kind of amazing that people expect me to be embarrassed or emotional about the cancer or the orchiectomy. Yes, I have cancer, and yes, I now have only one testicle, and yes, there's a good chance I may die. So what? Will running around like a headless chicken cure the cancer? Worrying won't accomplish anything. Educating myself about testicular cancer and treatment options is the best use of my time. I prefer to be pragmatic and rational about it.

Incidentally, the bandages around the incision itch a lot, as does all the hair growing back. The end of each hair is like a little pin, pricking my skin. Changing the bandages helped a little.

After the steri-strips from the orchiectomy came off, I tried using a half dozen regular bandaids, since there was a small amount of bleeding every time the scabs cracked. This didn't work well. What worked much better is an adhesive pad, like the 3M Medipore +Pad (brand name "Nexcare"). The bandage part is 1" x 2-3/8", which is too short to cover the full length of the incision. But if you cut off the end of one pad and overlap it with the end of another, it works well.

May 29, 2003
I called my urologist because I felt what I thought was new growth, and because I had lost six pounds since the day after the operation. Dr. Musmanno wasn't available, so I saw Dr. Sholder instead. Like Dr. Musmanno, Dr. Sholder has very good bedside manner. Dr. Sholder had me come in for an exam. The "new growth" was actually the sutures at the bottom of the scrotum, along with normal fluid buildup. The weight loss was also normal after an operation. He said that cancer patients often become concerned about every lump they feel, and that I should not hesitate to call Dr. Musmanno if I have any concerns.

May 30, 2003
I went to the hospital for CT scans of my pelvis, abdomen, and chest, with and without contrast die. As with the ultrasounds, I asked for and received a copy of the CT scans. They made me drink two quarts of a milky white barium sulfate solution. The berry flavor barely masks the chemical taste, and does nothing about the texture. I drank so much of the stuff that I was full to the gills. They also hooked me up to an IV for intravenous contrast die (120 cc of Optiray 320). The nurse jabbed the needle through the nerve on the way to the vein, causing intense extreme pain to my thumb and index finger. The pain went away after about 5 minutes. During the CT scan itself I felt very hot, the way a piece of food must feel when it is being nuked in a microwave. About an hour after the CT scan I had massive diarrhea, with a considerable amount of liquid coming out all at once. Luckily I was near a bathroom at the time.

I looked at the CT scans afterward. Although I could identify various organs (heart, lungs, intestines, spinal cord, kidneys), I was unable to determine whether they were normal or abnormal. So I will just have to wait until my appointment with Dr. Musmanno on Monday.

 Barium Sulfate "Berry Smoothie"

June 2, 2003
I scheduled a dentist appointment for the morning before my appointment with Dr. Musmanno. This was partly because I had heard that it is a good idea to have complete dental work before starting chemotherapy, as chemotherapy patients are more prone to mouth sores, bleeding and infection. Also, when they intubated me during the operation, they chipped some bonding agent off of one of my lower teeth.

June 2, 2003
I saw Dr. Musmanno for a follow-up appointment to examine the incision area and my recovery, and to review the CT scans and talk about a treatment plan.

The incision is healing nicely. There's a raised ridge of tissue under the incision -- the so-called "healing ridge". Aside from that, the swelling has gone down. Dr. Musmanno says that I can drive a car again.

The radiologist's report said that the CT scan found three tumors in lymph nodes, two in the chest and one in the abdomen:

  • A 5 mm tumor in the right cardiophrenic lymph node.
  • A 1 cm tumor in the right retrocrural lymph node.
  • A 3 cm nodal mass at the level of the aortic bifurcation.
This means I have stage III testicular cancer. I made an appointment to see Dr. Barsouk, an oncologist at West Penn Hospital, the same day.

June 2, 2003
Dr. Barsouk reviewed my records, took a look at the CT scans, and pulled in a radiologist consult on the CT scans. He confirmed that it is stage III testicular cancer. My chemotherapy is scheduled to begin on Monday, June 16. The only variable at this point is whether it will be 3 cycles of BEP chemotherapy (BEP = Bleomycin, Etoposide, and cisPlatin) or 4 cycles of EP chemotherapy. 4EP is thought to be about as effective as 3BEP for good risk patients, but with less toxicity. Dr. Barsouk is leaning toward 4EP, but we won't make a decision until June 16. I will read everything I can find concerning treatment of stage III testicular cancer. He's scheduled a pulmonary function test in case I decide to go with 3BEP. I will also have a PET scan and do sperm banking.

June 3, 2003
First sperm banking appointment. After I filled out several forms and they drew blood for viral testing, they showed me to a collection room. No videos, just a few magazines. Very clinical atmosphere, with disposable antiseptic pads for the chair and the same type of collection bottle they use for urine samples. The room must have been a walk-in closet at some point, because there were still boxes of stationery supplies in one corner. The task isn't as easy as it might seem, because one must catch the ejaculate in the collection bottle. You try walking, talking, patting your head and rubbing your tummy at the same time. It also doesn't help that the hair has started growing back like hundreds of tiny needles (they shave you for the orchiectomy). I called later and they told me the sample produced 4 vials. Since the goal is 18 vials, I will need the remaining 4 appointments. The appointments are separated by at least 2 and no more than 5 days for optimum sperm quality.

June 3, 2003
My urologist is calling Indiana University to get a consultation on my case. Stage III Seminoma is actually quite rare, and they should have more experience treating this type of testicular cancer. He believes that it might be beneficial for me to undergo radiation therapy in addition to chemotherapy. He will also talk to my oncologist about whether a head CT scan is necessary.

June 4, 2003
My urologist says that the folks at Indiana University do not recommend radiation therapy in conjunction with chemotherapy. They only typically recommend it for stage II cases. They say that either 4EP or 3BEP chemotherapy is recommended, and that I might want to lean toward 4EP because of the lower toxicity. He also said that unless I'm experiencing neurological changes, there's no need for a head CT scan, but that he would schedule it if I need it for peace of mind. (Very punny!)

My son has been smiling for weeks, but this is the first time he smiled when I wasn't holding him, so I could take his picture.

June 4, 2003
Some colleagues asked for my favorite charity. It is the Center for Excellence in Education, a tax exempt 501(c)3 education foundation. Donation information can be found on the Get Involved page.

June 5, 2003
Called 1-800-4-CANCER (1-800-422-6237) and ordered some of the American Cancer Society's free booklets on cancer treatment.

June 5, 2003
I sent email to Dr. Einhorn at Indiana University with questions about the relative effectiveness and toxicity of 4EP vs 3BEP. 3BEP is the standard treatment, but 4EP is offered as an alternative to avoid the toxic effects of Bleomycin. There is a study by Bajorin, Bosl et al that suggests that 4EP is as effective as 3BEP with reduced toxicity. But I could find no independent study that confirmed this. In fact, I found three studies that shed doubt on this result. Dr. Einhorn responded right away that Culine had presented a paper this week at ASCO showing a cure rate of 96% for 3BEP and 92% for 4EP, with 5 3BEP deaths and 10 4EP deaths. He also noted that he feels that 4EP is far more toxic than 3BEP because of "cumulative platinum related neurotoxicity, anorexia, nausea, and ototoxicity as well as the small risk of leukemia with etoposide at higher total dosage". He also noted that they almost never see patients with Raynaud's Phenomenon and that it is not certain that Bleomycin is the culprit. I was originally leaning toward 3BEP and this reinforces that inclination. Unless the pulmonary function testing raises an issue or my doctors can convince me otherwise, I'm going to go with 3BEP.

June 5, 2003
My beta-HCG levels are 37 mIU/ML as of June 2, 2003, down from 156 mIU/ML on May 20, 2003. The latter was before the orchiectomy and the former after. The half-life of beta-HCG is 24 to 36 hours, meaning that beta-HCG should return to normal about a week after surgery. Normal levels are less than 5 mIU/ML. The fact that the levels are dropping is a good sign. However, the fact that they are still above normal is probably an indication that the other three tumors are still producing beta-HCG. This is good news, because it means we can use beta-HCG levels as an indication of the cancer's response to treatment.

Beta-HCG levels are also elevated during pregnancy, typically reaching 10-50 mIU/ML in the week following conception, and peaking at 288,000 mIU/ML about two months after conception. Home pregnancy tests typically signal a result when beta HCG levels are at least 25 mIU/ML (e.g., the ept test requires 40 mIU/ML, Clearblue Easy 25 mIU/ML, and Confirm 25 mIU/ML).

Since my beta-HCG levels were 37 mIU/ML, I was curious whether they were high enough to be measured by one of those home pregnancy tests. Turns out that my beta-HCG levels are just barely enough to trigger the ept test, as is demonstrated by the following photograph. Pretty funny, eh?

June 9, 2003
The cryopreservation report shows a sperm concentration of 19 million/ml, forward progression of 74%, activity of 2++, round cells of 0-1 million/ml, and agglutination of 0%, all normal. A small sample was frozen and thawed, with a post-thaw density of 4 million/ml, forward progression of 56%, activity of 1-2++, and total motile cells per vial, based on 0.2 ml volume, of 448,000. These are good results, indicating that the cryopreservation should be successful. The viral testing came back all negative, as expected. They've frozen a total of 10 vials for me so far, leaving 8 to go. I'll probably fall short by 1 or 2 vials due to the time constraints, but that is ok.

June 9, 2003
Today I had an appointment with my regular physician, partly for a routine physical and partly to bring him up to date. I've lost 8 pounds since my last appointment. Aside from the cancer, I'm rather healthy, which bodes well for my ability to handle the chemotherapy. He also signed the form to get me a temporary disabled parking placard for the duration of the chemotherapy.

The dentist appointment didn't go as well. A cavity was found on the face of one of my wisdom teeth, and the decay went all the way to the nerve. Since root canals are not normally performed on wisdom teeth, however, the only option is a simple extraction. (Luckily, the tooth is not impacted.) Unfortunately, an extraction would require at least 21 days to heal (actually, more like 6 months to fully heal, but 21 days is the minimum), which would interfere with the chemotherapy schedule. Since the chemotherapy cannot be delayed, the extraction will simply have to wait until the chemotherapy is complete and my platelet and white blood cell counts return to normal. In the meantime I have a temporary filling and some Tylenol for the pain. (Ibuprofen and aspirin are prohibited because they are blood thinners.)

I've been reading about chemotherapy and diet. The good news is they recommend eating ice cream and drinking soda to keep hydrated and avoid constipation. The bad news is chemotherapy will probably make everything taste metallic.

June 10, 2003
Because Bleomycin can cause pulmonary fibrosis and impair lung function, a prerequisite for 3BEP chemotherapy is to check lung function. This is partly to make sure my lung function isn't already impaired, and partly to establish a baseline for later comparison. So today I went to the hospital for pulmonary function testing. This involves breathing into a tube while a nose clip closes off the nasal passages. The tests measured lung capacity, diffusion rates and flow, and required me to breathe in various ways, such as: breathing normally, holding my breath, pushing out as much air as possible as quickly as possible, panting, and breathing as though I had just run a marathon (3/4 breathes in and out very rapidly). It was actually kind of fun, except for when I accidentally swallowed with the nose clip on. (That made my ears want to pop in a kind of reverse valsalva maneuver.) My results were all good, with several above average. My hemoglobin was 15.9.

June 11, 2003
The PET scan was supposed to be today, but it's been cancelled because it needs to be "authorized". Apparently, use of a PET scan is not yet common with testicular cancer. My oncologist ordered the PET scan because he wanted to see if the tumors in my chest were metabolically active. If they weren't, then perhaps I'm stage II instead of stage III. If they were, then a follow-up PET scan after treatment could be used to determine whether there was still active cancer in the nodes. (Apparently chemotherapy with seminomas has a tendency to leave fibrotic tissue behind, making it difficult to determine with a CT scan whether the cancer has responded to treatment or not.)

June 12, 2003
I went to the hospital today to have my head examined, to make sure there are no tumors in the brain. This time there was no barium sulfate solution to drink, since it was just a head CT scan, but they did give me contrast dye through an IV. The IV was in my arm, instead of my wrist, so the nurse didn't hit the nerve. The head CT is fascinating. I can see my eyes, nasal passages, and the folds in the brain. Again, I don't know what's normal and what's not, so I will have to wait for the radiologist's report. But at least there's no sign of a little alien homunculus pulling the strings.

After the CT scan I went down to pathology to pick up a copy of the slides for a second opinion at the Indiana University Medical Center. The pathologist, Dr. Lynch, gave me a guided tour of my pathology slides. He said that this was the first time he's shown a patient his pathology slides. It was fascinating. First he showed me normal testicular tissue. I saw the seminiferous tubules lined with Sertoli cells and with small round germ cells in the center and some spermatids (immature sperm). He also showed me a few Leydig cells, which produce testosterone. Then he showed me the cancerous tissue, which was completely filled with germ cells. He showed me examples from the testicle, the epididymis, and the spermatic cord. Except for occasional lymphocytes responding to the cancer, it was uniformly germ cells. That's a pretty clear indication of a seminoma. I'm still going to send the slides on to Indiana University, just to be sure.

Seeing the pathology slides was helpful in another way. Consciously I always knew that cancer is the body's own cells multiplying unchecked, but unconsciously I had a misconception that it was something external invading the body. Seeing the slides make it clear on all levels that this was my own germ cells multiplying ad infinitum. Of course, the cause is probably still something external, such as DES, other hormones (synthetic or otherwise), pesticides or environmental pollutants. But the mechanism of the disease is my own cells multiplying unchecked and spreading.

A friend in Chicago sent me a box full of Caffeine-free Dr. Pepper, since you can't get it here in Pittsburgh.

June 13, 2003
My last sperm banking appointment was today. The five appointments yielded a total of 18 vials. On average, six vials is enough to achieve a single pregnancy with IVF, since IVF normally has a 15% to 18% success rate. The total cost, including viral testing, processing of the samples and storage, comes to $2,180.

My oncologist called around noon to say that he presented my case to the tumor board and they felt that even though I'm stage III, I'm a candidate for radiation therapy because my tumors are non-bulky and seminoma. He said that the small size of the tumors in my chest means I'm borderline between stage II and stage III, and seminoma is very susceptible to radiation therapy. If radiation therapy works, I could avoid some of the toxicity and negative side effects associated with chemotherapy. If radiation therapy failed, I could do chemotherapy later.

I have a lot of misgivings about this, especially the last minute nature of the change. I've agreed to see a radiation oncologist on Monday, after being assured that if I decide to go with chemotherapy, I could still begin chemo on Monday, just a few hours delayed. But unless she's very convincing, I'm going to go with 3BEP chemotherapy. Everything I've read indicates that chemotherapy is the preferred initial treatment in my situation.

This is definitely a roller coaster, and I'm going to have to cram this weekend to read everything I can about radiation therapy. I've been focusing exclusively on the risks and benefits of different forms of chemotherapy during the past few weeks. I ignored radiation therapy in part because I thought I wasn't a good candidate for it, and in part because I had read that chemotherapy is often more effective.

Some of my concerns include the following:

  • Which is more likely to cure me: Radiation therapy or 3BEP chemotherapy? What are the long-term survival rates?
  • A 3 cm abdominal tumor is borderline even for stage II. Considering that my original tumor doubled in size in a little less than two weeks, and it has been two weeks since my CT scan, it's likely that my tumors are much larger now.
  • I've read that chemotherapy is less effective when it follows radiation therapy.
  • My beta-HCG levels are higher than normal for pure seminoma.
  • I haven't yet heard the results from my head CT scan on Thursday.
  • Radiation therapy in my case would be extensive, risking cardiac and renal complications.

I do not want to play with fire just for a chance of possibly avoiding the greater toxicity of chemotherapy. It's quite clear to me that I need systemic treatment, since the cancer has clearly spread and is not contained to a specific area of the body.

If by any chance she convinces me to consider radiation therapy, my agreement will be contingent on my having another CT scan on Monday to check on the state of the tumors. If they can't get me a CT scan on Monday, I'm going with chemotherapy. If the CT scan shows that the tumors have grown or spread, I'm going with chemotherapy.

June 15, 2003
I am not looking forward to any kind of port or catheter. The idea of a tube snaking through my veins into my heart gives me the willies. I've got good veins, and don't have a problem with needle pricks (so long as they don't pierce a nerve), so perhaps they won't need a vein access device with me.

I've noticed in myself a tendency to indulge a little more since the cancer diagnosis. But it seems to be limited to things that I need, not things that I want. If I need something and would have hesitated before because of cost, I'm more likely to buy it now. But I still show self-restraint for expensive items that I don't really need, like the Segway HT.

June 16, 2003
The radiation oncologist said that they have doubts whether the tumor near my heart is cancer or not, and this would make a difference in whether I'm stage II or stage III. However, she recommends chemotherapy in my case, because radiation therapy risks undertreating me and because they would also need to subject part of my heart and lungs to radiation. My medical oncologist concurred, saying that he just wanted to present me with all the options. This gives me greater confidence in my oncologist.

My oncologist also recommended 3BEP, to avoid the toxicity associated with an extra cycle of etoposide and cisplatin in 4EP. Since we're on the same page, I will be undergoing 3BEP chemotherapy. They will include antinausea drugs like Zofran in the mix. Since I'm young and have good veins, they will initially use an IV to deliver the drugs, only switching to a catheter/port if it becomes necessary. (Although I don't like needles, I can handle it so long as the nurse doesn't hit the nerve. I much prefer an IV to a catheter, since the idea of having them snaking a tube through my veins into my heart makes me nervous.)  
 The room in which chemotherapy is given.
 The chairs look comfortable.

My schedule will be cisPlatin and Etoposide every day of the first week of each cycle, running from about 9 am to about 3 pm, and Bleomycin the second day of every week for all 9 weeks. I'm not sure how long the Bleomycin will take (i.e., whether it is also an all-day affair). I'm also not sure whether they will reset me to a Monday-Friday schedule with the second cycle.

Unfortunately, it was too late in the day to start 3BEP, so I will start tomorrow (Tuesday), at 8:30 am.

My head CT scan came back clear, so there are no brain tumors. They did not that I have chronic left maxillary sinusitis.

My oncologist still wants me to have a PET scan, and is fighting with my insurance company to get it approved. In particular, he wants to know whether the mass near my heart is metabolically active. He says that if the PET scan is to happen, it must happen no later than next week. If my insurance doesn't cover it, it will cost me approximately $4,000. Hopefully they'll cover it.

The good news is my insurance company has precertified the chemotherapy, so there shouldn't be any problems with that.

While I was at the pharmacy to pick up a prescription for antibiotics (for folliculitis, nothing to do with the cancer, although my oncologist likes the idea of my taking them while on chemo), Eckerd told me that my insurance has me listed with the wrong date of birth. After a half dozen calls to the insurance company, the insurance company confirmed that they have me listed with the correct date of birth. The insurance company also said that they don't show any transactions from Eckerd for me today. So it looks like Eckerd is billing the wrong insurance company and/or the wrong individual.

I've lost a total of 11 pounds since the day after the orchiectomy. That's enough that I'm in the last notch in my belt, and my pants still feel a little loose. I'll soon have to switch to another belt. I'll probably have to go shopping for new clothes when this is all over (i.e., Retail Therapy). So right now I feel pretty good, since I'm lighter than I've been in several years. Of course, I haven't started chemotherapy yet. I'm told that the chemotherapy starts affecting you after a few days, and really hits you in the second week.

I mentioned to my doctor that I've suffered from high pitch hearing loss and tinnitus since I was a child, due to childhood ear infections. Since these can also be side effects of chemotherapy, I won't necessarily be able to tell whether I'm getting it because of the chemotherapy. It might be a good idea for me to get a hearing test after the chemotherapy is over, to see whether there was an effect.

June 16, 2003
I am not worried about the cancer, nor do I fear it. I'm not the sort to worry about much of anything. If something is beyond my control, I don't waste time worrying about it, because nothing I can do can affect it. If I can do something about it, I take action, rather than waste time worrying about it. When I first suspected that I might have cancer, I started reading everything I could find on the topic. I've absorbed a considerable amount of material. I understand what will happen and what might happen (and also what won't happen). So even if the future is indeterminate, it is still well-defined. Knowledge is the antidote to fear.

If I die, I die. I will have done everything I can to avoid that possibility, and I have taken steps to provide for my wife and son in case I do die. But other than that, I'm not going to waste time dwelling on the possibility. I do not have any regrets.

I am aware that having a history of cancer is going to make it more difficult to get health and life insurance in the future. It may also affect my employability, regardless of any protections provided by the Americans with Disabilities Act. But there's nothing I can do about it. It it becomes an issue, I'll deal with it then.

In some ways, cancer will actually be good for me. I'm about 45 pounds overweight, so I'll end up healthier in some ways after the treatment is complete.

My wife does worry, but that's part of the job description. It helps that my newborn son keeps her busy much of the time, distracting her. He grows every day, so there's always something new. Today he was awake during our daily walk, turning his head to look at the scenery.

I do feel some anger. I did not cause the cancer and it is disrupting my life. I do not have any of the risk factors other than age. I want to know who or what caused the cancer. I've read dozens of papers about statistics relating to testicular cancer and dozens of papers about endocrine disrupting chemicals like diethylstilbestrol (DES), DDT, and estradiol. I'm amazed that such chemicals are approved for use in agriculture, including several known carcinogens. Several of these chemicals are fat soluble, meaning that lifetime exposure could have a cumulative effect. The use of such chemicals is reckless, irresponsible, and just plain stupid. If I can prove a connection, I will take appropriate legal action to correct this situation.

I do find amusing thoughts popping into my head, such as:

  • The virtues of chemotherapy as a mosquito repellent.
  • Metaphors that refer to chemotherapy in terms of caustic chemicals like Liquid Plumber, Draino, battery acid and nail polish remover.
  • Wondering who will shed more this summer, my dogs or me?
  • The benefits of being bald.
  • Wondering whether the folliculitis (a form of acne that forms around hair follicles) will go away when I no longer have any hair.
I've only been able to find two books of cancer humor: 57 Good Things About Chemotherapy, by Alec Kalla and Andy Williamson, and Not Now... I'm Having a No Hair Day by Christine Clifford and Jack Lindstrom.

My aunt sent me a copy of a 40-page essay she wrote 12 years after she was diagnosed with breast cancer. It talks about the emotional reaction to cancer and feelings. She talks about worrying that the cancer might recur, about the cost of cancer care, and about feelings of abandonment. She should probably publish it as a book, as there are no existing books that address this topic.

June 17, 2003
Today was my first day of chemotherapy. I arrived at 8 am, and they had me hooked up to an IV for hydration by 8:30 am.

Before they started the hydration, the nurse took some blood through the IV for testing. I suggested that they also test my beta-HCG levels, since they have only two data points for me: the day before the orchiectomy, and 10 days later. The latter was two weeks ago, so beta-HCG levels now would tell them whether the levels continued to decay or started back up. Since beta-HCG levels are my only tumor marker, it's a good idea to have them checked right before each chemotherapy cycle. (My chart says CBC, platelet, LDH, total bilirubin prior to each cycle, but does not make any reference to beta-HCG.) The doctor agreed. She took the blood in a syringe, and transfered it to each test tube afterward.

The side effects were manageable, although I'm aware that they will likely get worse. Also, I only got etoposide and cisplatin today; I won't get bleomycin until tomorrow. They gave me Zofran in the IV, and a prescription for use at home, so I didn't feel any nausea.

The nurse who inserted my IV was amazing. I hardly felt anything at all. They use a special type of IV that removes the needle after insertion, leaving a thin tube behind, since the aluminum in standard needles reacts with cisplatin. After the IV was started, I could feel the cool drip of the IV fluid.

First they used the IV to hydrate me for several hours. This meant I needed to pee every 30-60 minutes. The first time the nurse unhooked me from the IV, but the other times I just pushed the IV tree with me to the bathroom.

Next I was given Zofran to prevent nausea. The main side effect of this was it made me a little drowsy for 15-30 minutes. It also gave me a light dullness (similar to what happens when I take migraine medication) and a stiff neck. Then I was given etoposide followed by cisplatin.

They gave me an information packet about Neulasta (a successor drug to Neupogen). They will give it to me next week to increase my white blood cell counts. This helps fight infection. The information packet came with a free digital thermometer, since I'm supposed to take my temperature every evening.

After getting home, my main side effects appear to be some fatigue, feeling warmer, and a metallic taste in my mouth (presumably from the cisplatin). Creme Savers hard candy seems to help with the taste. Also, my sinuses feel full, almost like I'm about to get a sinus headache, but not quite.

My chemotherapy regimen is as follows:

  • Hydration for 3-4 hours before cisplatin.
  • Zofran half an hour before chemotherapy. (This drug is for nausea from the chemotherapy.)
  • Decadron half an hour before cisplatin. (This drug is for delayed nausea effects from the cisplatin.)
  • Etoposide 100 mg/m2/D (200 mg total daily dose) on days 1, 2, 3, 4, 5 of each three week cycle.
  • Cisplatin 20 mg/m2/D (40 mg total daily dose) on days 1, 2, 3, 4, 5 of each three week cycle.
  • Bleomycin 30 units IV/Day on days 2, 9, 16.
  • Neulasta on on day 5. (I think the nurse said Monday, which would be day 7, but my chart says day 5. The nurse later told me that since my day 5 will be in the hospital's short stay section, they will give it to me on Monday instead.)
  • Cephalexin 500mg three times a day. This is an antibiotic for my folliculitis, but my oncologist likes the idea of my being on an antibiotic during chemotherapy.

Initially I'm starting a day late, since I started on a Tuesday. They will reset me to a Monday-Friday schedule on the second cycle.

Wednesday June 25, 2003, I will have a PET scan in addition to the Bleomycin. They only do PET scans on Wednesdays. It still isn't clear whether the insurance company will pay for it, but hopefully they will.

This morning I had lost another pound, even though I ate a big dinner (stuffed chicked breast). Also, I had a nosebleed after waking up, which manifested itself as congestion in the left nostril, resulting in four bloody tissues. I've been having them off and on for a few years, presumably due to allergies and sinusitis, and always in the left nostril.

A better picture of the chemotherapy room. The chairs are comfortable leather recliners.

The day itself was rather boring. There were two other chemotherapy patients for a short while (their chemotherapy did not require hydration). Other than that I was by myself. The TV gets local channels only and generates a high pitched whine while it is warming up, but they're working on getting cable and a new TV. I watched it for a little while, but Dr. Phil is insipid and inane, and the soap operas are even worse. I spent the rest of the time reading two technical journals, reading 30 pages from a science fiction book I brought with me, and folding an origami robin and a dragon. Tomorrow I will bring a laptop with me and get some work done.

I can see why cancer patients describe getting chemotherapy as having paint remover poured into your veins. Chemotherapy is, after all, a derivative of chemical weapons like mustard gas. Doctors treating soldiers exposed to mustard gas noticed in 1942 that mustard gas affected rapidly dividing cells, suggesting that it might be an effective agent against cancer. They subsequently found that lymphoma patients given it by injection showed some improvement. Many modern chemotherapy drugs (alkylating agents) are descendants of mustard gas, albeit less toxic. (It doesn't help to cure the cancer if you kill the patient in the process.) So in some sense good arose from evil, in that a weapon of war lead to the development of a cure for cancer.

June 18, 2003
When I woke up this morning, the Zofran had started to wear off. I guess it does make a weird kind of sense to have morning sickness:
  • Positive EPT test result due to elevated beta-HCG levels.
  • Tumor in the belly.
  • Morning sickness.
Twins? ;-)

I shaved my arms, to make the medical tape stick better and avoid the pain of hairs being removed with the tape. Today the nurse put the IV in the forearm of my left arm instead of the inside elbow of my right arm. It didn't hurt going it, but later hurt a little, probably because it was close to the nerve. Using the forearm made it easier to type (I brought a laptop with me, so I could do some offline work).

A picture of the IV in my left arm and taped to my skin.

Today I had Bleomycin. I did not have an immediate reaction. Bleomycin is known to cause fever and chills about four hours after administration. The oncology nurse told me to take two Tylenol if this happens and to call them if it is severe.

Curiously, I didn't have much of a metallic taste today from the cisplatin. I did use many Cream Savers and lemon hard candy, so maybe that helped.

All in all, my side effects today weren't as severe as yesterday. All I really have is mild fatigue. I did get a sore throat later in the evening, but it was rather mild and didn't last long.

I have noticed a greater tendency for valid word spelling errors in my writing (i.e., its/it's, effects/affects, die/dye, have/has and so on). I wonder if this is somehow related to the chemo (i.e., fatigue), or just a coincidence.

This morning my weight went up by two pounds. Three sandwiches for lunch and a big dinner, plus some fluid retention from the IV probably was responsible. I'll see what happens tomorrow.

I finished my initial collection of cancer jokes. Some of them are quite funny.

I took a self-portrait in the bathroom mirror, and later flipped it
right/left in Photoshop. You can see my IV tree in the background.

June 19, 2003
Normally I only sleep 3-4 hours a night. However, ever since the operation, I've been sleeping 8 hours a night. Last night was an exception, where I again slept only 4 hours. I felt refreshed when I woke up, so I wasn't concerned. I mentioned it to one of the nurses, and she said that one of the drugs they gave me yesterday does that.

I was somewhat nauseous when I woke up, and that continued throughout the day. I did eat lunch, albeit around 2 pm, and was able to keep it down. The nausea was in the back of my throat, not in my stomach.

I got my beta-HCG results from Tuesday, and they were 18 mIU/ml, about half what they were after the orchiectomy. It's nice that they're heading in the right direction. (At this level, however, I'll no longer be able to trigger a home pregnancy test.) At least it's a sign that Junior is starting to shrink.

My oncology nurse likes to wear Sponge-Bob shirts. Today, when she removed the IV at the end of the day, she gave me a Sponge-Bob bandaid to cover the hole. One of the other nurses saw it and said "Annette's marking her patients again".

I noticed that they gave me some Mannitol (25% 50 ml) and asked what it was for. My nurse said it is to make sure I pee, so that the drugs continue to be excreted from my system. I don't see how I could avoid peeing, given the amount of fluids I'm getting.

Like the past two times I got the Zofran, I was drowsy and unable to concentrate for about 15-30 minutes after getting the last of it. I couldn't even focus enough to read.

Most of the other patients aren't there for as long as me, so there are constantly changing faces every day. Today they were more talkative and engaging, so I shared my son's picture with them. (Most of the other patients are much older than me.) Since some of their caregivers have college-age children, I talked with them about college admissions and financial aid. I've also been using a small laptop to work on content for a new web site that will be of interest to the financial aid community. (I don't have net access while in the hospital, so I have to focus on offline work.)

I have part of my schedule for next week, and will receive the rest of it on Friday. I will also be at the hospital on Saturday to receive my fifth day of chemotherapy. Since the oncologist's office is closed on Saturday, I will be receiving my chemotherapy in the hospital's short-stay wing.

My nieces sent me a homemade get well card and a present. The card said "Hair ... More trouble than it's worth!" and the present was a plush bald eagle with a note "The bald eagle soars above all others!". They put a lot of thought into it, and it brought a smile to my face.

The nausea continued throughout the evening, although it got a little better after I took a Zofran. Burping helped. Taking a bath didn't.

June 20, 2003
Today was by far the worst day so far. Not only did I have severe nausea all day, but I had a complete loss of appetite. My pee smelled really bad. My ears started hurting in the afternoon, and my tinnitus got worse. My nurse noticed that I had some bruises on my arms, so my platelet levels must be reduced. I lost two pounds since this morning. My skin felt like it was burning, but I did not have a temperature. I also felt chilled at the same time, despite the temperature in the room being set at 72 degrees. (I'm the sort of guy who can normally go out and shovel snow in short sleeves in the middle of winter and not feel cold. I also like to keep the house around 65 degrees, since I can easily get overheated. So for me to feel cold is unusual.) I also had the usual fatigue. As soon as I got home I went to bed, but couldn't sleep. I was able to eat (and keep down) half a serving of macaroni, some chocolate milk and some raisins.

I think my hair is starting to fall out. I normally shed a little chest hair now and then, but it seems to be increasing. I would not be surprised if it doesn't start coming out in bigger quantities over the next week or two, and if I start losing head hair as well. (When folks hear about chemotherapy patients losing their hair, they often don't realize that this means ALL hair, including body hair.)

The only good news is tomorrow is the last day of main chemotherapy for the first cycle. I still have Bleomycin on Wednesdays for the next two weeks, and a Neulasta injection on Monday, but my next five-day course of chemotherapy isn't until July 7-11.

I started keeping track of the costs associated with treatment.

US Airways did agree to extend the exchange period for my cancelled flight to Chicago for one year, and will be mailing me a voucher for that trip.

June 21, 2003
Today was the fifth day of chemotherapy. Since my oncologist's office was closed today, I received the chemotherapy in the hospital's Medical Short Stay wing. I was nauseous all day, and it took all my concrentration to avoid throwing up. But when the nurse gave me the decadron as a shot instead of a slow drip, it made me very hot and caused me to vomit up the lunch (salisbury steak, carrots, mashed potatoes, chicken noodle soup and greaps). Vomiting doesn't make you feel any better. My nausea was so bad that they nurse had questions about whether they should discharge me. Instead, she called my oncologist and gave me another drug for nausea. This worked, but made me incredibly drowsy and completely wiped me out.

In addition, my original IV was hurting during the hydration, so before they started the chemotherapy, they switched me to a fresh IV in my other arm.

I was in such bad shape all day that I couldn't do anything, not even read.

The nurse is recommending that I eat only clear liquids for the next few days.

At least my blood counts all seem to still be within the normal range, although they've dropped somewhat.

June 22, 2003
This morning I woke up at 4 am because of the ringing in my ears and couldn't fall back asleep. I took a Zofran, Decadron and antibiotic with a little food at 6 am. That got rid of most of the nausea, but there was still a background undercurrent of nausea I couldn't get rid of. Sitting, standing, and lying in bed were all the same -- no relief. Also, I think the burning sensation on my skin is peripheral neuropathy. It affects the pinky and ring finger on each hand, the back of the index finger and thumb, and runs up the outside of each arm. I can still type, but it feels like I have a permanent case of frostbite. My feet also feel like they want to go to sleep. I feel weak all over and am popping Tums to keep the Decadron heartburn at bay.

I can no longer hold my son because my breath and sweat are now toxic due to the chemotherapy.

June 23, 2003 -
June 29, 2003
I was hospitalized from Monday afternoon through Sunday afternoon.

When I saw my oncologist on Monday, I was complaining of severe abdominal pain that had started Saturday evening after my chemotherapy and intensified throughout the weekend. A blood test showed signs of a possible problem, so he had me admitted to the hospital that afternoon as a precaution.

I underwent multiple blood tests, X-rays, and an ERCP (Endoscopic Retrograde Cholangio-Pancreatography) because they suspected an inflamed pancreas. During an ERCP they put you under with general anesthesia and send a tiny camera down your throat to examine the pancreas, gallbladder and duodenum. The camera has attachments for making certain repairs (e.g., an inflatable ballon and a cauterizer) so they can fix certain problems while they're diagnosing the condition. In my case they found that I had acute pancreatitis and gall stones. They believe that the pancreatitis was caused by the chemotherapy and not by the gall stones. But they were concerned that the gall stones could potentially reinflame the pancreas so they recommended removing the gall bladder now, while my counts were still good. So on Wednesday I underwent laprascopic surgery to remove my gall bladder. During this procedure they go in through the belly button and two small holes in the chest and conduct the surgery in a minimally invasive manner. I've had a mildly herniated belly button for the past three years, so they fixed that at the same time.

I was then on only IV fluids (nothing by mouth) for several days to allow the pancreas to recover. They also kept me in the hospital because I became extremely neutropenic (my white blood cell counts had plummeted after the surgery). Then, when they restarted me on food, starting with a liquid-only diet (juice, jello, beef or chicken broth), my digestive system had trouble restarting. I was having extreme diarrhea every 15 minutes, partly because I had not had any food in about five days. Then they gave me anti-diarrhea drugs (I think immodium or a variant) and this caused the opposite problem. They did not want to discharge me until I had a normal bowel movement and my white blood cell counts had started recovering.

The way my doctors explained it, I probably would have had problems with gall stones 20-30 years from now, but the chemotherapy tends to cause all problems to happen all at once.

While I was in the hospital I lost another 5 pounds, so the total weight loss is now 20 pounds.

I am still neutropenic (reduced white blood cell counts), but there's no reason why I need to be hospitalized for this. While I was in the hospital they trained me to give myself my own Neupogen shots, so I will be taking care of this. Since I'm neutropenic, I need to avoid people (especially anybody who has been sick recently), flowers, fresh fruit and fresh vegetables and so on for a while.

The only other major event is the wisdom tooth that needs to be extracted (and which we were hoping to avoid extracting) fractured Saturday morning and now definitely needs to be removed. This will happen sometime early this week. My platelet counts are still fine, so this shouldn't be a problem, but if it is a problem I will probably need to undergo a platelet transfusion before the procedure.

My restrictions right now also include a prohibition on strenuous exercise, lifting anything more than 10 pounds, bathing until the incisions heal sufficiently (showers are ok), etc.

My mother, who just retired, is flying in on Monday and will spend the next 4 weeks with us helping out.

While I was in the hospital my hair started falling out faster because of the chemotherapy. If I grab a clump of hair with my fingers, it tends to come out very easily. Gray hairs and thinner hairs are falling out first. I'm also bruising very easily. The tinnitus also makes it difficult to sleep or concentrate enough to read.

The hospital room was rather nice. I did not enjoy being on an IV all the time and the constant pokes and prods to draw blood. One time they drew blood three times in one hour because somebody didn't coordinate all the orders, and the first one had to poke me three times because he was having trouble hitting a good vein.

The IVs were especially annoying. The machine that regulates the flow of IV fluid makes a clicking noise every second. Whenever the IV bag runs out of fluid or the IV line gets a crink in it, the machine starts sounding an alarm. There's a silence alarm button on the machine, but that works only for a minute. The only solution is to call the nurse to fix the machine, and it takes the nurse anywhere from 15 minutes to an hour to respond. Even when the machine is working, they are pumping so much fluid into you that you have to pee every 30 to 60 minutes. All this makes it very difficult to sleep for more than half an hour at a time.

The bed, a Hill-Rom Advance Series Bed, is a very cool piece of technology. The firmness automatically adjusts according to pressure to minimize pressure, so it is a very comfortable bed. It also does all the usual contortions of a hospital bed (i.e., you can put it into a sitting position). The nurses can also use it to weigh you while you're in bed.

June 30, 2003
The second pathological opinion from Indiana University Medical Center came in today, and it confirms that there are no nonseminomatous elements in the testicular cancer.

My hair loss is accelerating. A good deal of hair is now missing from the back of my head. Previously the back of my head was completely covered with hair, with only pattern baldness on top. The hair loss is more akin to severe thinning than complete baldness right now, since there is still some hair, just not all that much of it. Enough hair is missing that the back of my head now feels cooler, so I will definitely need to wear a hat. My wife says the hair loss looks like mange. I will probably shave my head later this week, since that will look better than the intermediate result.

A picture of the back of my head, showing the hair loss so far

The appointment with my oncologist brought some really good news. They measured my counts in the office, and my white blood cell counts are 4.8 (they ran the test twice), so I'm no longer neutropenic. (A WBC of 4.8 is within the normal range. Before chemotherapy my count was 8.4 to 9.3, so this is still below normal for me, but it is within the normal range. I will have one more shot of Neupogen tomorrow, and that's it unless my counts drop again.)

My oncologist also said that my tumor markers have dropped to zero. This means that the cancer is responding to treatment.

He is going to delay the start of the next cycle by a week, to give my body time to recover from the surgery. He wants me to have a hearing test before the start of the next cycle, because my tinnitus is so severe. If the ENT confirms hearing loss, he may want to substitute carboplatin for cisplatin. Although carboplatin isn't as effective as cisplatin for non-seminoma, it has been successfully used for seminoma patients and has significantly reduced ototoxicity. He is also talking about possibly reducing me to two cycles instead of three, depending on the results of the PET scan and other diagnostic tests.

My broken wisdom tooth is scheduled to be extracted tomorrow. The PET scan and Bleomycin are scheduled for Wednesday.

July 1, 2003
More hair fell out last night, and what was left wasn't worth keeping. I woke up with a lot of hair on my pillow. So I decided to shave off the rest. A picture of the result appears below.

The latest in hair styles

I started experiencing some bone pain today, presumably from the Neupogen. Since my last Neupogen shot was today, hopefully the bone pain will go away in a few days.

My wisdom tooth was extracted today. It took only 2-3 minutes after they numbed me up with novocaine. The novocaine numbed me all the way to my left eyeball, so I didn't feel a thing. I took a percoset when I got home during the first gauze change. The old wives tale about using a wet teabag to help with clotting does help.

The oral surgeon had a neat piece of technology in his office. Instead of taking X-rays the old fashioned way, by forcing you to bite on a film positioner, he has a device that rotates about your head taking X-rays of your entire mouth all at once. You still have to bite onto a positioner to keep your head from moving, but it isn't as bad as having bulky film in your mouth. Since the machine is carefully calibrated, you don't need to wear a lead-lined shield to protect you from stray X-rays.

July 2, 2003
The bone pain has gone away.

I had a negative reaction to the Bleomycin today. It gave me the shakes and chills. I didn't have a fever, however. The shakes and chills went away after about 4-5 hours. Since I didn't have this last time, I think the fact that I was fasting for the PET Scan may have had an impact. It certainly caused my fatigue to become more severe.

Today I had the PET Scan. First the nurse installed an IV. Then she installed a urinary catheter. The latter is necessary because the radioactive sugar they use during a PET Scan collects in the bladder, so they need to flush the bladder while the PET Scan is proceeding (not because of a radiation risk, but to allow for the imaging of that part of the body). The last time I had a catheter installed, I was unconscious under general anesthesia. This time I was awake, and it hurt quite a bit.

I was then wheel-chaired to the PET Scan facility. This consisted of the equipment mounted in a trailer. The equipment is fairly expensive, so several hospitals share the equipment. This is why West Penn Hospital only conducts PET Scans on Wednesdays, since the trailer is parked outside their nuclear imaging department only on Wednesdays.

About 45 minutes before the PET Scan they injected a radioactive sugar through the IV. Since I was fasting that day, my blood sugar levels were lower, allowing the radioactive sugar to travel through the body. Parts of the body that are metabollically active then collect the sugar, causing them to show up on the PET Scan image. Cancer tumors are metabollically active, so this technique is useful for identifying active cancer sites. This can be helpful in staging the cancer (i.e., identifying whether suspected tumors found during a CAT Scan are actually cancer), detecting microscopic tumors below the resolution of a CAT Scan, and in determining whether tissue still contains cancer after treatment. The latter will be important later, since seminomas tend to become fibrotic tissue after treatment, meaning that they still show up on a CAT Scan after treatment is complete. Timing of the PET Scan is critical, since they must scan the body while the sugar is still radioactive (it has a very short half life). They divided the scans into six sections, taking about 5 minutes per section.

When it was over, a nurse came in to remove the catheter. That hurt as much as the insertion, because they blow up a balloon in the catheter after it is inserted to prevent the catheter from slipping out and they didn't fully deflate it.

I will probably not receive results of the PET Scan for several days, since it needs to be evaluated by a radiologist.

I have no further diagnostic tests or treatments scheduled for the rest of the week.

July 5, 2003
The incision above my belly button opened up again on Friday and started bleeding. It soaked through six changes of bandages over the past two days before it started slowing down enough to start clotting. I wasn't showing any signs of infection, so the doctor didn't see any need for me to come in.

July 7, 2003
My doctor examined the incision area and said that it was fine. There was a little clear seepage while he was examining me, and he said that that was normal. He told me to change the bandages every four hours, to use clean gauze to clean the area, and to use neosporin or bacitracin along the incision line before putting on a fresh bandage. Some bleeding or seepage is fine, so long as the seepage is clear and not discolored.

The PET scan showed no active disease in any of the sites from the CT scan. However, it showed significant bone marrow activity throughout the skeleton, presumably because of the Neupogen. It is possible that these findings represent a false negative because of the extensive bone marrow activity. As such, they are inconclusive. The radiologist is recommending a repeat PET study six weeks following the completion of chemotherapy.

My doctor said that it is normal to feel fatigue at this point, and that I should take a nap in the afternoon if I feel tired.

I've lost 2 more pounds in the past week, so my weight loss is slowing. He would have expected greater weight loss following the gall bladder surgery, so only 2 pounds is good. Must be my mother's good cooking.

July 8, 2003
The hearing test was rescheduled for today since Dr. Barsouk wanted to be sure to get the results before my next cycle. We had to drive all the way to UPMC McKeesport Hospital for the test, and ended up arriving late because the directions were bad and we had to take a 20 mile detour because of construction at the exit we were supposed to take.

The audiogram did show some additional hearing loss. The right and left S.R.T. were 20 db and 22 db, compared with 5 and 10 db on an audiogram from 19 years ago. Discriminability is 100% at 60 db, compared with 100% at 40 db 19 years ago. So basically I have trouble hearing soft voices. The high pitch hearing loss has also become worse by about 10 db.

The workaround is for me to tell people to speak louder when I have trouble hearing them.

The tinnitus was much better today, not much worse than it was before the chemotherapy. So perhaps the tinnitus is temporary. The otolaryngologist recommended staying away from caffeine, alcohol, chocolate, and steroid medications (e.g., the decadron) to help minimize the tinnitus.

July 9, 2003
The tinnitus was fairly strong when I first woke up, but then dropped back to just above pre-chemo "normal" levels an hour or so later. I also didn't have as much fatigue today. So hopefully the chemotherapy side effects will all be temporary and will go away a few months after I'm done.

Today is the last day for the horrible tasting antibiotics (Metronidazole). The pills are so huge (500 mg) that it's hard to avoid having them touch your tongue even when swallowing them with copious amounts of water. The bad taste then lasts for hours.

I've lost a total of four inches of wasteline so far. If I lose much more weight, I'll have to buy all new clothes.

I haven't needed to shave for the past few days. One of the few benefits of chemotherapy.

One of our vacuum cleaners would constantly lose suction after the filters got clogged with cat hair. Rather than buy a run-of-the-mill vacuum, we bought a Dyson Animal (Purple). It finally arrived today. It's an expensive vacuum cleaner, but it works so much better than any other vacuum cleaner we've tried. The suction is much stronger, and it doesn't lose suction as it cleans. It took two extra weeks to arrive, because Amazon.com sent it by UPS to my billing address, a PO Box. (In a classic "blame the customer" move, Amazon said that it was my fault because I wrote "PO Box" instead of "P.O. Box" in my billing address, so their software couldn't tell that it was a PO Box. Maybe they need to hire better programmers, or at least address correct all their customer addresses. They still didn't answer why it was sent to my billing address, when I specified my street address as the shipping address. Amazon's customer service operation has gone downhill recently.)

July 10, 2003
Today I heard from a friend that the information I posted on a mailing list about my cancer caused him to check out a testicular mass. It turned out to be stage I non-seminoma. I'm glad that my email helped him catch his cancer early.

The follow-up appointment with my oral surgeon was very quick and went very well. He said that I was healing fine from the wisdom tooth extraction.

My tinnitus today was back to pre-chemotherapy levels. Also, I didn't have any peripheral neuropathy today. I also did not have much fatigue. All of these are good signs that the chemotherapy side effects will be temporary and not permanent.

Today was the first insurance company glitch I've had to deal with. They classified the pulmonary function test as "HDO OUTPT HOSP OTHER", and deducted a $50 copay. They should have classified it as "HDM OUTPT HOSP DIAGNOSTIC". Diagnostic tests do not require a copay. I called them and asked them to correct the error. I noticed that I get the "Explanation of Benefits" statements about a month after the actual procedures.

July 11, 2003
Today was the two-week follow-up appointment for the gall bladder surgery. The doctor said that draining in the incision area is normal, and that I should expect it to continue to drain for another three weeks. He said that instead of using large gauze bandaids, I should use absorbent gauze folded over and taped. This would absorb the draining fluid better. (The large bandaids I was using had a tendency to leak, especially when I sleep on my side.) He also told me to "milk" the incision every time I changed the gauze to get the built-up fluid out. He replaced the upper two bandaids with fresh steri-strips (these were healing well), saying that I would not need to change them. He also replaced the lower right large bandaid with a smaller bandaid, saying I should change it as needed. He scheduled a follow-up appointment for three weeks from now.

There was no co-pay for this visit because my insurance apparently doesn't require a co-pay for follow-up appointments within 90 days of surgery.

Dr. Semins said that it is ok for me to drive again, although I should continue to refrain from picking up anything that weighs more than 5-10 pounds.

July 14, 2003
Today was the start of my second three-week cycle of chemotherapy. The antinausea medication they gave me (Zofran) caused a burning sensation along my vein. Since this was the second time this happened, they switched me to Kytril, a different antinausea medication. That stopped the burning. They told me I could continue taking the Zofran pills that evening, but I should try it without the Decadron (a steroid) to see if it was enough. The purpose of the Decadron is to enhance the antinausea capabilities of Zofran. But since I had a negative reaction to the Decadron on day 5 of the first cycle, it would be helpful to see if I can get away without the Decadron.

They had cable TV installed in the treatment room today, so the TV is no longer limited to the on-air network TV channels. I was able to have CNN on in background while I worked offline on my laptop. I also spent some time reading a science fiction book by Brin (Kiln People).

My counts were all fine. In fact, my white blood cell count was 8.3 mIu/ML, which is solidly normal.

My insurance company called today to let me know that the $50 copay on my pulmonary function test has been "waived", their way of saying that I was right that it should have been classified as a diagnostic test and so not subject to a co-pay.

In the meantime, I got the explanation of benefits from the first meeting I had with my oncologist, and it showed him as being out-of-network. Since I called the number on the back of my card that day to verify him as in-network, and also have printouts from the insurance company's web site showing him as in-network, I called to file an appeal. I've even got witnesses, since I called the insurance company from my urologist's office while my urologist called the oncologist to also verify that he was in-network for my insurance. Since this means a difference of $3,900 in my out-of-pocket expenses, I'm definitely appealing. I wonder whether the insurance company is deliberately incompetent or whether they just hire morons.

Incidentally, the insurance company also made an error on a urinalysis, coding it as "pay to patient" instead of "pay to doctor". Since it was only $6, I deposited the check and paid the corresponding urologist bill for $6. That was simpler than waiting on hold for half an hour for the insurance company.

July 15, 2003
The Kytril was much more effective at stopping nausea. Not only didn't I have any nausea, but I also had an appetite. Of course, it could be that this was not due to the Kytril alone, but because I also had a little bit of Zofran before the nurse stopped the IV because of the burning sensation. So I'll see today whether it continues to be as effective.

I still took a Zofran tablet in the evening. Last night I skipped the Decadron tablet (with doctor's approval) and was fine. Decadron is supposed to enhance the antinausea effect of Zofran. But since a Decadron shot caused me to vomit on day 5 of the first cycle, and because my doctors thought that the Decadron may have contributed to my pancreatitis and abdominal pain, it was decided to see how I react to skipping the Decadron in the evenings.

My nurse pointed out that nausea tends to increase as the week progresses. I did have some nausea this evening.

Today I got poked three times. The first time missed the vein. The second time hit the vein, but the vein did not have good blood return. Third time worked.

An interesting hair loss observation. You don't lose hair from every region of your body to the same degree. In some areas the hair is just more sparse (e.g., eyebrows, upper chest and belly) and in some areas it is completely gone (e.g., head, pubic region) and in some areas there is no change (e.g., legs and arms). Even in those areas the hairs are a little thinner, and some of the hairs will come out easily. Also, even in the areas with hair loss, the hair is still growing back in, but the new hairs shed a lot. Looking at the hairs that didn't fall out, I can see that they start out thick, and then suddenly become thinner. I haven't needed to do anything to the hair on my head since I shaved it off two weeks ago. I also haven't had to shave my face since then; the five-o'clock shadow comes off when I shower. Eyebrows are still there, but they've thinned a little.

Apparently they sell specialty wigs called "merkins" for folks who lose their pubic hair. This is incredibly humorous. Is there really a market for such things? I can understand wearing a wig or a hat to insulate the head from cold air in wintertime. But a wig for one's nether regions?

July 16, 2003
The nurse was right. Last night I had some nausea, but the Zofran tablet seemed to help a bit. But then I woke up this morning at 5 am with nausea. I didn't vomit, but it is about as strong as it was on day 4 or day 5 of the previous cycle of chemotherapy. My blood pressure is also up a bit.

At the hospital they gave me Kytril and Decadron right away. It took the edge off the nausea, but there was still an undercurrent of nausea throughout the day. As soon as I got home I took a Zofran and Decadron. I'm also going to switch to the BRAT diet (Bananas, Rice, Applesauce, Toast), which is supposed to help with nausea.

I was so nauseous that I was unable to get any work done while at the hospital. I read the newspaper, but was unable to start a science fiction book, and the TV was too boring. I tried sleeping a bit, unsuccessfully.

Today was a four-poke day. The first needle couldn't find the vein. The second needle worked, but then the vein dried up about an hour before I was done with chemotherapy. So the nurse tried the other arm. The third needle missed the vein. So then she tried the veins on the back of my left hand. That one worked. Since I still have hair on the back of my arms, she used a clingy bandage that sticks to itself instead of tape to cover the needle hole with gauze.

July 17, 2003
I almost vomited last night, twice, and almost once this morning. The nausea is getting pretty bad. So far I've been able to avoid vomitting through will power, but that won't work much longer.

The peripheral neuropathy and tinnitus are back.

I've also lost all the weight I gained last week, so I'm back to having lost 23 pounds since the orchiectomy.

Today was a one-poke day. My oncology nurse switched off with a different oncology nurse since sometimes different nurses are better at finding different veins. This time it worked. (I've been holding the veins on the back of my hands, which do pop out well, in reserve for the third cycle, to ensure that I avoid the need for a port-a-cath or picc line.)

They prescribed Ativan (Lorazepam) for me to take for the nausea in the evening. It helped a lot, but it also knocked me out. I took one around 6 pm and one around midnight. I missed dinner as a result. (Not that I would have been able to eat anything anyway.) So as of Friday morning, I've lost another 2 pounds, bringing the total to 25 pounds. I'm going to stick with the BRAT diet, plus some liquid diet (soup broth, jello, etc.).

July 18, 2003
Upon arriving at the hospital this morning, I promptly vomited. It was mostly the vegetable broth soup I had had for breakfast. The nurse told me to take plenty of Ativan this weekend to try to sleep through the worst of the nausea. I have no appetite.

Other than that, today was a one-poke day.

July 19-20, 2003
Despite taking Zofran, Decadron and Ativan continuously, I had nausea all the time this entire weekend. There was also a taste change in the back of my throat that made lemon candy intolerable. The Ativan made me sleep through a lot of it, but one can only sleep for so long. This is pure torture. I constantly feel like I need to vomit.

I ultimately did vomit at 8:30 pm on Sunday, in the bathroom sink. Vomitting never makes you feel better.

July 21, 2003
My follow-up audiogram went well, showing only mild deterioration in hearing loss, well within the variation from test to test. My otolaryngologist does not recommend changing the chemotherapy protocol as a result, but does recommend having a follow-up audiogram about a month after chemotherapy is over.

My follow-up appointment with the urologist also went well. He said that my incision area has healed well (the healing ridge is gone), and that unless any of the followup CT scans or X-rays shows a problem, he won't need to see me again.

At the oncologist they gave me Neulasta, a variant on Neupogen. This caused me severe bone pain. I tried napping through it and the nausea, without success. I vomitted twice Monday evening, once at 10 pm and once at 11:30 pm, and was not able to sleep all night.

July 22-24, 2003
I was hospitalized on Tuesday (discharged Thursday) because of severe bone pain, severe abdominal pain and severe nausea. I vomited several more times while at my oncologist's office.

The severe bone pain was caused by the Neulasta working too well. It caused the bone marrow in my back and sternum to overproduce white blood cells, causing the white blood cell count to far overshoot normal levels. It took until Wednesday for the white blood cell counts to drop to 12.3, which is about 30% above normal.

The abdominal pain was assumed to be related to the nausea, which itself was delayed nausea from the chemotherapy. X-rays showed no problems in the abdominal area. So the doctors kept me in the hospital on IV fluids, liquid-only diet and anti-nausea medication until I recovered. They started me back on semi-solid food on Wednesday, and decided to keep me overnight to make sure I was back to "normal". (Unfortunately, the hospital kitchen staff apparently had only one kosher meal available -- lasagna -- so I had the same thing for lunch and dinner Wednesday and lunch on Thursday.)

While I was in the hospital the first IV backed up, causing a lot of swelling in the right arm. This also caused a lot of bruising on my right arm. The nurse put a hot compress on it and the swelling went down after about a day. They switched me to an IV in the left arm, using a vein in the muscle. I hate IV fluids, because they pump so much fluid in you that you have to pee every half hour. But they doctors say that it is important to pump a lot of fluid through you after chemotherapy so that you don't suffer from kidney failure.

My tinnitus is back, much more severe than before.

I talked with one of the oncologists about how to avoid this happening again next cycle. He said there's a new anti-nausea medication they can try. He said he'll also discuss with my oncologist about admitting me to the oncology ward for the last day of chemotherapy plus a few days, so that I'm not in severe nausea over the weekend. (Also, when they admit me to the hospital in a hurry, they can never get me a bed in the oncology ward. This means that the nurses have less experience with anti-nausea medication, and have to go get it instead of having it readily available on the floor. This causes delays in getting me the anti-nausea medication.)

July 25, 2003
I started having nonstop diarrhea at 4 am. If I drank some water, it came out the tush a few minutes later. Other than that, my vitals are fine and I'm feeling good. I called the oncology nurse when she arrived in the office in the morning, and she said I could take immodium. That seems to have worked. I'm drinking pedialyte to replace the lost electrolytes (I hate Gatorade, so pedialyte is a tolerable substitute).

The oncology nurse called back an hour later, saying that my oncologist would like me to come in to give a stool sample, since he's concerned that my diarrhea might be due to an infection. But when I said that it was just like the last time I was hospitalized, and that the immodium seems to have worked (so I have no sample to give), and that my diarrhea smelled normal (i.e., not foul), she agreed to let me skip giving the sample, so long as I continued to be ok. She said that if anything changed, I should come in immediately.

I really don't want to spend the weekend in the hospital, and I'm convinced that this is just like the last time, when my digestive system took a while to reset after not having any solid food for a while.

I have a few interesting observations about hair loss. I haven't had to shave my face or head since the beginning of July. This isn't really because my hair has stopped growing, although it is growing more slowly. But it seems that whenever I shower, the stubble on my face comes off with the dirt. Today I noticed that there is some hair growing on my upper lip, but it is much finer than previously and the hair is almost completely transparent.

While I was in the hospital my son started 'talking'. If you talk to him, he'll gurgle back and try to hold a 'conversation'. He has also started sucking on his fists, although he hasn't yet opened his hands while sucking on them. It will be interesting to see whether he becomes a thumb sucker or a finger sucker.

July 26-27, 2003
Friday night I started having bone pain again. It occured in three places: the base of my back, the sternum, and in my right leg. I'm not sure the latter is related, as it wasn't in the thigh but in a diffuse region on the right side of the knee. I called the oncologist on call and he said I should take two oxycodone (I had some left over from after the gall bladder surgery) and to call again in the morning if the pain didn't improve. I still had bone pain in the morning, but it wasn't as bad. My wife gave me a back massage, but said that the chemotherapy drugs in my sweat caused her hands to tingle. So next time she's using disposable gloves.

I'm experiencing taste changes for the first time. My saliva has a chemical taste. Also, I made some tuna fish with mayo and thousand island dressing (one of my favorite concoctions) and couldn't stand the taste. It tasted salty. I also can't stand lemon juice any more. Caffeine free Dr. Pepper still tastes great, even without the fizz. I had some falafel and pizza for brunch.

I still have bone pain Sunday evening, but just in my back. My legs (calves) feel a bit weak when I stand or walk. I think this is related to the bone pain I had in my legs earlier.

I'm drinking a lot of water in order to flush the chemotherapy drugs from my system. I don't want it to build up in my kidneys. So it's a constant drink-pee-drink-pee cycle. My pee no longer smells like battery acid, the bruises I got in the hospital are almost gone, and the peripheral neuropathy is almost gone, so this idea seems to be working.

But I still have the tinnitus and hearing loss. The hearing loss is the equivalent of 20-30 db, according to a sound meter I used to measure the TV volume setting.

July 28-29, 2003
The pain in my calves (more of an ache or soreness than pain) is not bone pain, but muscle pain. My oncologist says that this is a common side effect of chemotherapy, and it should go away when I'm done with chemotherapy. I will just have to walk through it.

My oncologist thinks that my delayed nausea after each 5-day course of etoposide and cisplatin may be due to underdosing of my Zofran. He wants me to take one 8mg pill three times a day instead of two times a day. The CVS pharmacy did not have enough Zofran on hand to fill the prescription, so they're going to have to order it. It should be in by tomorrow afternoon.

My oncologist continues to believe that three cycles of BEP is overkill in my case, but he acknowledges that there is a statistical benefit to three cycles. So we are going to do the third cycle. He is warning me, however, that the third cycle will be by far the worst as far as side effects are concerned.

We discussed the bone pain from the Neulasta. He says it is very unusual for someone to have more side effects with Neulasta than with Neupogen. He wants to keep me on Neulasta, however, because the drug is self-regulating to some extent. In other words, when it produces too many white blood cells, those cells help excrete the drug, bringing down the white blood cell count to normal levels. He prefers this to the hit or miss approach with Neupogen. To deal with the pain, he says they'll put me on a morphine drip in the hospital or give me oxycontin.

My oncologist wants me to consider delaying the third cycle by a week. The way he described it was "I don't want you to come out of this a criple; don't try to be a superman." We agreed to meet on Monday, August 4, to discuss it further. If I'm back to "normal" (where normal has a surreal definition for cancer patients), he'll let me start the third cycle on Tuesday, August 5, otherwise he'll want me to wait a week to start on August 11.

The other issue we discussed was admitting me to the hospital for part of the third cycle. He said he wants to admit me on day 3 of the third cycle, give me day 4 and day 5 of chemotherapy in the hospital, and then keep me in the hospital for 2-3 days after that. That way they can monitor my nausea more closely, ensure that I get anti-nausea drugs round the clock, and give me the new anti-nausea medication if necessary. This will also allow them to give me pain medication for the bone pain. The goal is to avoid having my digestive system shut down because of chemotherapy, nausea and vomiting. In other words, better to admit me to the hospital in advance than to have to admit me as an emergent case. This way they'll be able to reserve a bed in the oncology ward, so I'll get better care.

July 30, 2003
At my oncologist's recommendation, I started taking the 8mg Zofran pills once every 8 hours instead of once every 12 hours. Not only doesn't this seem to be working, but it gave me a very painful headache. On a scale from 1 to 10, where 10 is the most painful headache I have ever had, it was a 45. It was far worse than any migraine I have ever had. I called my doctor who told me to stop taking the Zofran. He said that there is nothing I can take for the headache, and that I would just have to wait until the drug had flushed from my system. So I spent the afternoon in bed. The headache started dissipating at 8 pm, around the time I would have taken the next Zofran.

Also, probably unrelated, some of my joints have started occasionally 'popping' (akin to when you crack your knuckles). It isn't painful, just something new and different.

August 1, 2003
The surgeon who diagnosed and treated my pancreatitis (and also performed the gall bladder removal) says that I now have diabetes caused by the pancreatitis. A urinalysis showed a 4+ glucosuria reading. He said that the diabetes is probably permanent. I have to have a bunch of blood tests, including a fasting blood sugar test (so I can't do it today). I've scheduled an appointment with my PCP to review the test results and learn about diabetes management.

Until I've met with my PCP, the doctor says that I should keep the carbohydrates to a minimum. So instead of the BRAT diet, which is high in starches (bread, spaghetti, etc.) I should eat a high protein diet, such as scrambled eggs, hot dogs, hamburgers, chicken, and turkey. Of course, such a diet doesn't help the nausea.

The good news is I'm actually feeling pretty good today. No real nausea, although I have a loss of appetite and a bad taste in my saliva. The tinnitus is also only moderately severe today.

August 4, 2003
I met with my oncologist today. We decided that I would start my third cycle of BEP tomorrow. He had been leaning toward delaying it by a week, but decided that I was well enough that a week's delay was not necessary. He did, however, have the oncology nurse give me two bags of saline through the IV today, since he thought I was a little dehydrated.

The results of my blood tests came back, and weren't good. My blood glucose and cholesterol levels have gone haywire. (There is some evidence in the literature that cisplatin-based chemotherapy can cause hyperlipidemia.) My blood glucose levels are 184 (normal is 70-109), my 2-hour post-prandial glucose levels are 358 (normal is < 200), and my hemoglobin A1C is 8.1 (normal is 4.4 - 6.1). My cholestoral levels are 238 (normal is 120-199, two months ago I was 206), triglycerides are 248 (normal is < 150, two months ago I was 142), HDL cholesterol is 43 (normal is 40-59, two months ago I was 47), LDL cholesterol is 149 (normal is 60-129, two months ago I was 131), and my LDL/HDL ratio is 3.47 (two months ago I was 2.79).

Tuesday and Wednesday I will receive my chemotherapy on an outpatient basis. I will be admitted to the oncology ward on Thursday and receive my chemotherapy on Thursday, Friday and Saturday in the hospital. They will keep me in the hospital through Monday or Tuesday. This will allow them to monitor and treat my nausea, try a new anti-nausea drug on me if necessary, give me insulin for the diabetes, and give me pain killers for the bone pain. They also want to keep my hydrated to prevent kidney failure. While I'm in the hospital they will bring in an endochrinologist to consult on the diabetes.

There seems to be some disagreement about the cause of the diabetes. The surgeon who diagnosed the pancreatitis and performed the gall bladder surgery thinks that it was caused by the pancreatitis and is therefore permanent. My oncologist thinks that it was induced by the Decadron (a steroid) they've been giving me for nausea, and therefore temporary. My PCP says that my hemoglobin A1C levels indicate to him that it is permanent. Hopefully the endochrinologist will be able to shed some light on the matter. In any event, the management of the diabetes is the same, so today I have to go buy a blood glucose meter (my PCP is recommending the One Touch UltraSmart Meter Kit with built-in log book).

August 5, 2003
The first day of chemo in the third cycle went well. The oncology had a little trouble putting in the IV, but fished around a bit with the needle until she found the vein. So today was a single poke day.

They are having me take Compazine in addition to Zofran and it seems to be working well. I have minimal nausea and no side effects from the Compazine. On the other hand, this is the first day, and cisPlatin tends to result in delayed nausea.

My PCP explained that the high Hemoglobin A1C tends to be a long-term measure, and so elevated levels are an indication that the diabetes was on its way before I started chemotherapy. He did acknowledge that some folks believe it represents blood sugar levels over 6 weeks instead of 6 months. He also said that the pancreatitis and decadron could have accelerated matters. So now I have three different doctors telling me three different things:

  • PCP: Was on its way anyway, and so permanent.
  • Oncologist: Decadron-induced, and perhaps temporary.
  • Surgeon: Pancreatitis-induced, and so permanent.
Hopefully the endochrinologist will be able to shed more light on the matter.

From my understanding of Hemoglobin A1C, it measures the amount of glucose that has bonded with red blood cells. This reflects the blood sugar levels over the lifetime of the red blood cells, which is 2-3 months. That is more in keeping with the timeframe of my chemotherapy, which started almost 2 months ago. Also, my urologist did the same urinalysis tests multiple times (all before the pancreatitis), and none of them showed glucosuria. So I'm more inclined to believe my oncologist (who also specializes in hematology) and the surgeon more than my PCP. But we'll see what the endochrinologist says.

The cause of the diabetes can have implications for treatment. For example, if it was caused by the pancreatitis, then insulin shots might be warranted. If it was caused by long-term development of insulin resistance, insulin shots wouldn't necessarily help. Managing my diet and spreading out carbohydrate intake more evenly throughout the day will probably help for all diagnoses, as will exercise and weight loss.

My PCP gave me a basic education about managing diabetes. I'll need to get more information. For example, I'd like to find a web site that lets you specify your favorite meals, and then assembles them into a set of daily/weekly menus that help manage your blood sugar levels. If I can't find such a web site, I'll have to implement my own. It would actually be kind of fund to implement, since I could try multiple optimization methods (e.g., hill climbing, simulated annealing, simplex method, depth-first search, and genetic algorithms). I also need to find a few good diabetic cookbooks. My PCP is also recommending that I increase my exercise regime and lose an additional 30 pounds.

The One Touch UltraSmart glucometer is an interesting gadget. It's like a fancy PDA in many ways. In addition to testing blood glucose levels and storing the results in a built-in logbook, it lets you record blood pressure, height, weight, hemoglobin A1C, doctor visits, exercise, meals, and so on. You can also upload the data to a computer for printing graphs and charts.

August 6, 2003
Today I measured my glucose levels for the first time. They were 204 before breakfast, 337 before dinner. I also asked my oncology nurse if any of my previous blood tests included glucose levels (obviously non-fasting), and she said that on June 2 I was 154 and on June 23 183. The finger pricks weren't bad, but I suppose that they will quickly become annoying after the novelty wears off and my fingers build up calluses.

I haven't yet figured out where I'm going to carry the glucometer. Right now I carry too many gadgets and things with me. I've got a Palm Pilot, cell phone, business card case and digital camera in one pocket, and a wallet, money click, and pen in the other. Keys are in a third pocket. I may need to replace the Palm Pilot and cell phone with a Handspring Treo 600 to make room. But I was holding off on getting a Treo until they improved the battery life, since I don't like having to recharge the unit every day. (My current cell phone and Palm Pilot can go a week before needing to be recharged.)

Today was a two-poke day. The first attempt to start an IV was in the most popular spot on my right arm. Although it initially worked, the flow stopped a few seconds later. She wrapped a warm towel around my forearm, and that caused another vein to pop to the surface. It is encouraging that so far they haven't needed to resort to IVs on the back of my hand.

I had a little more nausea today. This was probably partly due to my last Compazine pill being taken at midnight, partly due to the Kytril not being as effective, and partly due to it being day 2. The nurse also told me that they may not be able to get the Emend (the anti-nausea medication for break-through nausea) from the hospital formulary tomorrow, but they've got other tricks up their sleeves. I'm quite certain that I'm going to have break-through nausea again this cycle.

I will be in the hospital starting tomorrow and running through Tuesday, so there will be no entries in the chronology until I am discharged.

August 7-12, 2003
For whatever reason they weren't able to get the Emend from the hospital, but the local CVS had it in stock so they called in a prescription and my wife picked it up. The Emend works very well, and was able to control my nausea. Between the Emend, the Compazine, and the Kytril, I had less nausea this cycle than the last. My fatigue is much more severe, however. I am totally lacking in energy. I also have absolutely no appetite.

While I was in the hospital the Joslin Diabetes Center nurse came by to provide diabetes education. That was quite helpful.

The Decadron definitely has an effect on my glucose readings. My glucose readings are 100 to 150 points lower without the Decadron.

I feel really horrible. My doctor says that the next few days will be the worst. I asked about going back to the hospital, but he said there isn't anything they can do to make it more tolerable. I have an appointment to see him Thursday, and to get the Bleomycin.

 Photograph of the Cathedral of Learning from West Penn Hospital.

August 13, 2003
The tinnitus and peripheral neuropathy are back full throttle, worse than before. I tried eating some scrambled eggs for breakfast, and it tasted like I was eating foam rubber. But at least I was able to keep it down. I've lost a total of 38 pounds to date.

I'm still physically weak and without any energy, but things seem a little better this morning than they were yesterday. But not much better. I can't do anything -- I have a 60-second attention span. The various anti-nausea medications only take the edge off. Between that and the diarrhea, I'm constantly visiting the bathroom or drinking pedialyte.

August 14, 2003
My oncologist had me provide a stool sample to make sure I hadn't picked up an infection that was causing the diarrhea. They won't know the results for a few days. In the mean time he prescribed flagyl. They'll call me with the results, which will entail either increasing the dosage or stopping it. He also prescribed immodium.

They gave me kytril for the nausea and hydrated me for several hours before giving me the Bleomycin.

Between the nausea and diarrhea, I couldn't sleep. I also had a pretty severe case of acid reflux, but Tums handled that. The nausea seems to have abated somewhat by 2:30 am Friday. I still have it, but it isn't as bad. Well, my saliva tastes bad, and makes me want to vomit every time I swallow.

We talked about my undergoing physical therapy and joining a gym. He wants me to do this, but not until he gives his ok.

August 15, 2003
I discovered a drawback to weight loss today. I've lost enough weight that there isn't much fat around my hips. This makes lying on the floor painful on the hips. I still have enough fat on the tush that sitting isn't a problem, although it is less comfortable.

I've decided that instead of getting a Segway, I'm going to get a lot of little gadgets. For example, I bought an Epson TM-U300PD receipt printer and an AirClic barcode scanner, and will create a shopping list printer for the kitchen computer. I'd love to have a Segway, but the shopping list printer and similar ideas are much more practical and less expensive.

August 17, 2003
The weight loss is causing problems in other areas. I no longer have any cushioning around my knees. Previously, I would sleep on my side with my legs together. Now, my knees bump against each other somewhat painfully. So I have to sleep with a blanket between my legs.

The nausea seems to be gone, except when I get the bad taste in my mouth. The bad taste comes and goes. It is especially bad in the morning or when I lie down. The taste is in my saliva. When I swallow the saliva sometimes it makes me nauseous. Brushing my teeth or eating a breath mint seems to help reduce the taste for an hour or so. Drinking a lot of water also seems to help.

The tip of my tongue tingles or is numb. This is probably related to the taste changes.

I still have peripheral neuropathy and tinnitus. My arms also hurt a bit, especially where all the IVs have gone in.

I feel like I have passed through purgatory and barely survived to return to the land of the living. The chemotherapy for testicular cancer is one of the most effective forms of torture ever devised by mankind.

August 18, 2003
The oncologist's office called to say that the stool sample culture came back negative, so I didn't pick up an infection in the hospital. They told me to stop taking the Flagyl.

August 19, 2003
I woke up this morning with really bad peripheral neuropathy. I still can't feel my fingers, but at least I can type again. I also had some really deep bags under my eyes, severe fatigue, and a bad taste in my mouth.

Later in the day I got a very severe migraine. It was unlike my normal migraines, in that it was on the right side (normally mine are on the left) and had severe nausea associated with it (normally the nausea, if any, is very mild). I also had minor nosebleeds in both nostrils. I'm pretty certain it was a migraine because I had a heightened sense of smell, which always happens with my migraines, and it responded to Amerge. It was similar in some ways to the Zofran migraine I had previously.

I gained 10 pounds in the last two days. Some of this is rebound from the diarrhea (i.e., water weight gain). The rest is not watching how much I ate while recovering from diarrhea.

August 20, 2003
I woke up at 3 am for an unknown reason and couldn't get back to sleep until 5 am. I woke up again at 9 am with a residual migraine. I wonder if I'm suffering from some kind of Zofran withdrawal.

I still have severe peripheral neuropathy. Taking a very hot bath helps. The vein pain in both arms seems to have gone away. I can't say the same for the bad taste in the mouth nor the tinnitus.

My weight has stabilized, losing a pound from yesterday. At this point I've lost a total of 26 pounds since the day after the orchiectomy.

My blood glucose levels this morning were 135 (top of the normal range). I guess having spanish rice for dinner helped. I had skipped measuring glucose levels while I was recovering from the diarrhea.

August 21, 2003
I had another migraine starting last night around midnight. This one was a more normal left side migraine, but more intense than my usual migraines. The Amerge also only took the edge off the migraine, leaving behind a still nasty headache with nausea. I was only able to sleep for 3-4 hours, and when I woke the migraine was still present.

Today was my last day of Bleomycin. It took three pokes to find a vein that wouldn't dry up. My white blood cell counts were low (1.1), so I'm neutropenic and will be taking Neupogen for the next few days. I'm also somewhat anemic, but not enough to warrant taking Procrit.

I pointed out to the nurse that I had developed freckles at each of the IV sites, and she said that it is common for patients receiving Bleomycin. It is called "chemo burn" and may fade a little with time. That probably explains why all the scars from my surgeries are dark.

I noticed today that my eyebrows have thinned out considerably. They're still there, just not as bushy or prominent as before.

August 22, 2003
Today was my second day of Neupogen, and the bone pain is back. It is just in my back, but it is pretty severe.

August 23, 2003
I had to take two oxycodone pills last night because of the bone pain, which is now in both my back and sternum. The pills dulled the pain enough so I could get some sleep.

The doctor said that the pain is an indication that it is probably safe to skip the last Neupogen shot. He said that if I wanted, I could take some additional pain medication along with the last Neupogen shot. But I'm all out of oxycodone, and one can't call in a prescription for that type of medication. So he said I should monitor my temperature and watch out for signs of infection, and call him again if my temperature goes above 100.5 (it's 98.1 right now).

August 24, 2003
I'm still feeling slightly nauseous, but there's no migraine. If the nausea is coming from the Bleomycin (a first for me) hopefully it will go away in a few days.

The bone pain is starting to go away.

I tripped on the sidewalk near my house (there's a two-inch drop at the edge of the sidewalk), scraping my knee pretty badly. It seems to have clotted ok, but is still red and painful. I'll show it to my oncologist at my appointment on Monday.

August 25, 2003
My white blood cell counts were 8.6, so I'm no longer neutropenic. I am, however, still anemic, and my red blood cell counts were low enough that they decided to give me Aranesp. (Aranesp is like Procrit, but lasts three times longer, so only one shot is usually required.) That stuff really stung badly going in. Hopefully my red blood cell counts will go up by the time they need to give me the second shot, so I can avoid the sting.

They also drew blood for checking my tumor markers (beta HCG). They'll call me with the results a few days from now. It took them four pokes to find a vein they could use to draw the blood.

The hospital will call me to schedule the follow-up CT scan (about two weeks from now) and PET scan (about six weeks from now). The PET scan is delayed to allow time for the Neupogen to get out of my system.

My oncologist said I can travel again, so long as I schedule any travel around my appointments.

I've officially lost a total of 30 pounds from start to finish.

August 26, 2003
My CT scan has been scheduled for September 9, in the morning.

Today my primary complaints are: peripheral neuropathy (especially in my fingertips), bad taste in my mouth, tinnitus, and slight nausea.

August 27, 2003
The incision above my belly button started oozing again, but quickly scabbed over. Otherwise nothing much happened today. I still have peripheral neuropathy, tinnitus and light nausea.

August 28, 2003
Good news. I got a copy of the lab results for beta HCG (my tumor marker) and it shows a normal level of <5 mIU/mL. This is an indication that the chemotherapy was effective against the cancer. We won't know for certain that the cancer is gone until the CT and PET scans.

August 31, 2003
While grocery shopping, the incision above my belly button started oozing again. I wasn't doing anything strenuous -- no heavy lifting, no bending at the waist -- so I have no idea what could have caused it to start oozing. There was a fair amount of pus, so maybe the pus had been building up pressure until it popped. When I got home I 'milked' it to get the rest of the pus out, then put on a fresh nonstick bandage.

September 3, 2003
The incision is still seeping, but it doesn't seem infected.

The scab on my knee is starting to come off, with new skin underneath, so my platelet count must be ok.

My eyelashes are falling off, so I'm still losing hair. My eyebrows have also thinned out to a faint shadow.

I have a greater tendency to sunburn. It isn't painful (no itching), but I've been peeling even after a slight exposure. I've also gotten a few new freckles, especially where they poked me with an IV. (My orchiectomy scar is also dark brown.)

So far I've been told that I look like each of the following celebrities: Paul Shaffer, the three curious characters from Blue Man Group, and Lex Luthor (Michael Rosenbaum). Decide for yourself.

September 5, 2003
A limited amount of facial hair has started growing again, mostly on my upper lip. The mustache hairs are coming in transparent instead of dark brown.

The incision over my belly button is still not healing completely, I still have tinnitus and peripheral neuropathy, and I still have occasional mild nausea.

September 8, 2003
I figured out that the belly button incision was continuing to seep because the bandage was preventing it from forming a scab. More accurately, a scab was forming within the gauze and not over the incision. So I took off the bandage and let the incision aerate for four hours, which was enough time for the scab to begin to form.

I got another batch of explanation of benefits forms from my insurance company today, bringing the total cost of treatment over $100,000. As usual, the insurance company misclassified a diagnostic test as "hospital outpatient other" (the blood test was performed in the hospital's outpatient laboratory) and tried to charge me a $50 copay on a $40 blood test. I called the insurance company and they did the usual song and dance about having to look into it and get back to me in a few days. This time they had an additional twist of their computer system having problems.

September 9, 2003
Today is my post-chemotherapy CT scan. My oncologist has ordered a CT scan of the chest, abdomen and pelvis. Hopefully this will show no evidence of disease. If it shows any nodes, then I will have to have a PET scan to distinguish between fibrotic tissue (scar tissue that has not yet been reabsorbed by the body) and active disease.

The CT scan process was similar to the last time. As before, they told me to drink two containers of the same berry-flavored magic potion and then to change into a hospital gown. The berry shake has to be drunk within a period of ten minutes; I made it with three minutes to spare. Like the last time, I was full to the gills and could barely get the last ounce down. Then I had to wait an hour for the solution to spread through my system. Then they walked me down to the CT, hooked me up to the IV and tossed me through the hole in the doughnut. I could feel the same metallic taste in the back of my mouth, and the hot sensation a bag of popcorn feels just before it pops in the microwave.

Like the last time, I asked for a copy of the films. I looked at them when I got home, comparing them to the previous set of films. It looks like the tumors have shrunk, but that there is some residual mass. So I'm guessing that a PET scan will be required. But I won't know for certain until I get a copy of the radiologist's report, as CT scans are difficult to interpret.

September 10, 2003

I got a copy of the radiologist's report on yesterday's CT scan.

My May 30, 2003 CT scan showed three tumors in the lymph nodes: a 5 mm tumor adjacent to my heart, a 1 cm tumor just below the diaphragm (in the right retrocrural lymph node), and a 3 cm tumor just above where the aorta splits to go into the legs.

The new CT scan shows that the tumor next to my heart is gone. The other two tumors are still present, but have decreased in size. The tumor at the level of the aortic bifurcation has decreased in size from 3 cm to 1 cm.

Since there are still nodal masses, a PET scan will be required to determine whether the remaining masses represent active disease or fibrotic tissue (scar tissue that has not yet been absorbed by the body). It is common for seminoma to leave behind fibrotic tissue. The PET scan has not yet been scheduled, as the hospital only schedules them up to four weeks in advance. But hopefully they'll schedule it for four weeks from today. (The PET scan has to be scheduled at least six weeks after my last Neupogen shot, to avoid the possibility of a false negative. My last Neupogen shot was on August 22, and I had a shot of Aranesp on August 25, so the PET scan can be no sooner than October 8.)

If the PET scan shows active disease, there are many possible directions treatment can take, including radiation therapy, a RPLND surgery, and further chemotherapy (salvage chemotherapy).

September 11, 2003

Some darker facial hairs have started growing, but the bulk of the facial hair growth is white or translucent. All of the new hair is much finer than before. My chest hair (what little is left) continues to fall out.

September 12, 2003
On Tuesday, September 2, 2003, I was interviewed by CNNfn for a segment about student financial aid. I wore a suit to the interview, and decided to take my picture in a mirror before removing the suit.

I do look a little bit like the evil alien from the planet zork in this picture. This was the best of several photographs. The other photographs made me look a little bit like a snearing conehead or a tenctonese "newcomer" without the spots.

September 14, 2003
Today was Cancer Survivor Day at PNC Park. A handful of lectures on cancer topics in the morning were followed by a Pittsburgh Pirates baseball game in the afternoon.

Finding the venue for the event was a bit confusing. The American Cancer Society provided clear directions on how to get to PNC Park, but didn't specify where the event would be held once one arrived at the park. None of the security guards seemed to know anything about the event either. Eventually I found it by walking all the way around the park.

The first talk was about melanoma but very basic. The question and answer session was much more interesting than the talk itself. Next was a motivational speaker who was quite boring and would be a failure at motivating a chicken to cross the road. Most of his talk had something to do with flunking high school and being spanked by his father.

The most interesting aspect of the baseball game was the pre-game preparations. First they had six people painting the lines, using a string as a guide. Two of the people carried a six-foot-long paint shield, one used a spray can to paint within the shield, and one held the empty spray cans. I'm not sure what the job of the fifth and sixth people were, but it looked like they were supervising the others.

After they were done painting lines, two of the people dragged metal grates on ropes along the dirt to remove scuff marks. The metal grates and rope contraptions looked similar to the tool one uses to create crop circles. I wonder if any of these staff moonlight in corn fields in the midwest? After they were done with this, they used a hose to spray the dirt with water, presumably to keep it from blowing around in the wind. They then reinserted the first through third based into the ground.

The game itself was sad. I left after the second inning, when the Pittsburgh Pirates were losing to the Philadelphia Phillies 8 to 0. They tried changing pitchers, but the replacement didn't have any better luck. The fans did give a brief cheer when the Pirates finally got a man on base, but it wasn't very loud, since there were only a few thousand fans present.

The price gouging at the ball park was amazing. $3 for a bottle of water, $5.50 for a slice of pizza, $2.50 for a small bag of candy, and $3.50 for a pretzel. Needless to say, I brought my own food. They wouldn't let me take a can of soda into the park, but did let me bring in a bottle of water and a bag of potato chips. I'm not sure I understand the logic, since aluminum is recyclable and Alcoa is based in Pittsburgh.

Unfortunately, I discovered that the chemotherapy has made me rather prone to sunburn. After being in the sun for only an hour, my arms and neck had turned bright red.

September 15, 2003
I asked a friend for some statistics relating to how often the residual nodal masses left behind by seminoma represent active disease. He said that Sloan Kettering quotes a 10% rate of active disease in post-chemotherapy nodal masses, based on pathological evidence. Indiana University believes the figure is lower, based on a lower relapse rate. The lower Sloan Kettering figure is probably due to residual cancer that is in the process of dying. He also noted that PET scans have been found to be highly accurate with pure seminoma residuals, with no false positives and very few false negatives. (For nodal masses smaller than 3 cm, PET scans had a 6% false negative rate and correctly identified the 9% of seminoma patients where the nodal masses represented active disease.) So the odds are that my two remaining nodal masses, which are 1 cm or smaller, represent fibrotic tissue and that the PET scan should be able to confirm this.

September 18, 2003
I met with my oncologist to review the results of the CT scan. He said that given the decrease in the size of the tumor masses and my normal tumor markers, he expects the PET scan to show no evidence of disease. He's scheduling a CT scan for November 13, representing the start of surveillance. He will be following a standard surveillance schedule of every two months during the first year, every four months during the second and third years, every six months during the fourth and fifth years, and annually thereafter.

My blood counts were normal, including my red blood cell counts, so there was no need for another shot of Aranesp (Procrit). My veins seem to have recovered, as the nurse had no trouble finding a vein to draw blood.

The second wave of facial hair came in dark brown, my normal color. I had a little bit of 5 o'clock shadow today, mostly on my upper lip.

September 22, 2003
I called the surgeon who removed my gall bladder because the incision above my belly button was still seeping. He said to not worry about it, as it takes "months and months" for such incisions to heal because of the chemotherapy and diabetes. He said to call him in a few months if it still hasn't healed or if there are signs of infection, and to keep it covered with a bandaid to soak up the seepage.

September 23, 2003
I had my first physical therapy appointment today, primarily for evaluation. The physical therapist said that my arms are relatively weak (they started shaking in the middle of the stretches) and that my back muscles also needed work. The goal of the physical therapy is to eliminate the back pain and to rebuild the muscle mass and endurance I lost during chemotherapy. The physical therapist used electrical stimulation and heat pads on my back to relax the back muscles. This was followed by stretches focused on my back muscles and exercises that addressed my arms, legs and calves. The therapist said I will need physical therapy two times a week for at least a month. My appointments will be on Tuesdays and Thursdays.

September 25, 2003
During my second physical therapy appointment, the therapist added three more exercises for my arms.

My eyebrows have started growing back in and are visibly darker. My body hair has also started returning. The hair on the top of my head isn't coming in as quickly, and it looks like the hairs are transparent.

September 29, 2003
The hair on my head has started growing again. It is coming in salt and pepper, with more salt than pepper.

October 7, 2003
This physical therapy appointment was similar to the previous one, except that they added an exercise for the back and use of a stairmaster. I was only able to last 2.5 minutes on the stairmaster (9 flights), partly due to fatigue and partly due to pain.

They also added a second set of electrode pads for my shoulder blades in addition to the pads for the base of my back. After a few minutes at an intermediate setting, I quickly became accustomed to the electrical stimulation and ended up at the highest setting.

October 8, 2003
I had my post-chemotherapy PET scan today. I arrived at registration at 8 am, instead of the scheduled 9 am, because the hospital had called me the day before to push up the appointment. Apparently pre-registration had mistakenly scheduled me for the 10th, even though PET scans are only done on Wednesdays. Since this caused them to be double-booked for my original time slot, they had to take me earlier. Since I was one of the first people in the waiting room, there was hardly any wait for registration this time. (When they're crowded, there's a waiting time of an hour or more.)

This time they didn't need a catheter. Instead they had me visit the restroom to empty my bladder just before the scan. They said a catheter wasn't necessary this time because my bladder wouldn't obscure the two nodes being questioned by my oncologist. They did a total of six sectional scans. Also, instead of putting in an IV and injecting the radioactive sugar into the IV, they injected the sugar solution more directly. Since I wasn't hooked up to an IV or catheter, I didn't need to change into a hospital gown. As a result, the entire process took about 3 hours or so from start to finish, compared with the 5 hours last time.

While I was in the PET scanner, I developed a maddening itch on my face. They not only tell you not to move, but they strap your arms in by your side to prevent you from moving. So I spent 20 minutes trying to not think about the itch next to my nose. It helped that my tush started getting sore, so I could focus on that instead of the itch.

The PET scan.

October 9, 2003
At my physical therapy appointment today the therapist increased the number of sets per exercise from 20 to 30 and added two new exercises: stationary bike (5 minutes) and hand cranks (3 minutes forward and 3 minutes backward). I was very tired afterward.

October 10, 2003
My oncologist faxed me a copy of my PET scan results today. The bottom line is "no evidence of FDG avid malignancy".

(FDG is fluorodeoxyglucose, a radioactive sugar. Metabolic activity consumes sugar, causing areas of metabolic activity to show up on the PET scan as hot spots. Many types of cancer, including testicular cancer, show increased metabolic activity. The fact that there were no abnormal hot spots on the PET scan is an indication that the cancer has responded to treatment and is no longer present.)

My post-chemo CT scan had shown that the nodal mass adjacent to my heart was no longer present, and that the two abdominal nodes had decreased in size, with the larger of the two decreasing from 3 cm to 1 cm.

A PET scan was conducted on Wednesday to determine whether the two residual nodal masses represent active disease or fibrotic (scar) tissue. (Approximately 9% of seminoma cases involving residual nodal masses sized 3 cm or smaller represent active disease.)

The PET scan findings were:

  1. No evidence of FDG avid malignancy.
  2. Moderate update in the anterior abdomen close to the midline superficially likely secondary to inflammatory changes. Clinical correlation recommended.

The latter is probably referring to the incision above my belly button from the laprascopic gall bladder surgery.

In addition, the PET scan noted that "there is interval decrease in FDG uptake within the bone marrow. The bone marrow FDG is within normal limits on the current scan" and "there is no other abnormal FDG activity noted on this scan to suggest the presence of malignancy, with special reference to the retroperitoneum".

Since PET scans have a 6% false negative rate when used to stage testicular cancer, this means the probability that I still have active disease is less than 0.5%.

The surveillance phase officially begins on Thursday, October 16, 2003.

October 14, 2003
I was very tired after my physical therapy appointment, in part because the therapist increased the weights and/or doubled the time. For example, she had me use 9 pound dumbbells with the arm exercises, and doubled the time on the exercise bike.

I'm still weaker than I was in April, but much better than I was when I first started physical therapy. The back pain is also significantly diminished. She thinks it would be ok for me to join a gym to continue the stretches and exercises on my own, provided my oncologist agrees. She prepared a report for me to take to my oncologist on Thursday. (She did caution me to avoid any abdominal exercises until my belly button incision is fully healed.)

October 15, 2003
It pays to have a copy of your full health insurance plan document (not the short 2-page summary, but the 100-pager) and to be persistent in appealing claims.

During my last hospitalization, I was admitted to the oncology ward, which has only private rooms. My health insurance policy doesn't cover private rooms, so they wanted to hold me responsible for the difference in cost between a private and a semi-private room. In this case it amounted to a total of $10,196.00 in addition to the $100.00 deductible.

My oncologist faxed a letter to the insurance company, indicating that the admission to the oncology ward was medically necessary and that the oncology ward has only private rooms.

The insurance company ultimately granted the appeal, because although the health insurance plan normally pays only the average semi-private room rate, there's a clause that states that the plan will pay 90% of the average private room rate if the hospital has only private rooms.

The new explanation of benefits form reduces the patient responsibility portion to $982.80 plus the $100.00 deductible. Although $1K still hurts, it is much better than $10K.

October 16, 2003
The oncologist appointment went well. My tumor markers are normal (AFP 5.3) and my blood counts are normal (WBC 4.5, Hemaglobin 14.4). (There was no beta-HCG tumor marker because it was a little less than a month since the previous beta-HCG last time. There was no LDH tumor marker because the lab made an error and never tested for LDH even though the test was ordered.) They drew blood for a fresh set of tumor markers and will let me know how they turn out.

I'm now officially on surveillance. My first surveillance CT scan will be on November 13, 2003, and I'll have an appointment with my oncologist a week later on November 20, 2003. After that there will be tumor markers and CT scans every two months for the first year, every four months for the second and third years, every six months for the fourth and fifth years, and annually thereafter.

My oncologist also said that he's fine with my joining a gym and that it's ok for me to be discharged from physical therapy, so today was my last physical therapy appointment.

October 27, 2003
The insurance company granted my "special circumstances" appeal of the remaining $982.80 from my hospitalization in the oncology ward. So all I have to pay now is the $100 deductible.

November 13, 2003
This CT scan wasn't fun. The first attempt at an IV didn't get a good blood return, and was hurting, so the nurse tried my left arm. This one got a good blood return, but the vein blew out while the machine was injecting contrast die, causing about 15 CCs to go into the muscle. It hurt a lot and caused my biceps to swell up. It looked and felt like a water balloon. The nurse said to put it on ice and the swelling and pain should subside by evening. (It does, however, make one nervous when one hears one nurse telling the other that she'll have to fill out an incident report.)

The third IV, back in the right arm, worked, and I had the usual metallic taste in the back of my throat. The sense of heat was a bit more intense this time. I felt it in both hands, in addition to my face. I'm guessing that it was more intense due to there being more contrast die in my body this time. I also got a migraine and nausea as a result.

I looked at the films from my CT scan, and I can't see any sign of the two residual nodal masses that were present in the previous CT scan. So I'm hopeful that the radiologist's report, which should be available in a few days, will indicate "no evidence of disease".

November 17, 2003
I just got the CT scan report, and it has some bad news. The radiologist says that there may be evidence of metastatic disease in the lower right lobe of the lungs. My oncologist says that it is at the edge of the resolution of the CT scan, so he wants me to have a PET scan on Wednesday. The PET scan offers higher resolution and also indicates whether the nodules are metabollically active or not. Since my son's surgery is scheduled for Wednesday morning (at a different hospital), I'm going to try to have the PET scan scheduled for the afternoon, but I may not have a choice.

I will be meeting with my oncologist on Thursday to go over the PET and CT scan results and to have blood drawn for tumor markers. If the PET and tumor markers are both positive, I'll probably have to have salvage chemotherapy (typically VeIP) and that may start as early as Monday. Or my oncologist may want to wait a month and take another CT scan to see if the nodes grow in size or number.

The full radiologist's report is as follows:

1. Possible new subpleural nodules posteriorly in the
   right lower lobe as compared to September 9, 2003.

1. Stable small retrocrural and retroperitoneal lymph 

1. No metastatic disease in the pelvis.

COMMENT: CT images were obtained from the lung apex 
through the symphysis pubis. Oral contrast was given 
as well as 120 cc of Optiray 320 intravenously. 
Optiray was used because of a history of diabetes. 
Comparison is made to September 9, 2003.

There are very small subpleural nodular densities seen
posteriorly in the right lower lobe which appear new
from the prior study of September 9, 2003. They are
best seen on image 26. They could represent metastatic
disease. No other nodules are seen in the lung parenchyma.
There are no enlarged lymph nodes in the hila or mediastinum.
No pleural effusion.

In the abdomen, there are a few small retrocrural lymph
nodes which are stable from the prior examination. The
largest of these lymph nodes measures approximately 1 cm
in diameter. There is also a residual 1 cm lymph node in
the retroperitoneum anterior to the aorta and inferior
vena cava. This is also stable. No new adenopathy is seen
in the abdomen. There has been prior cholecystectomy.
Fatty infiltration of the liver persists. A 1 cm hyperdense
focus in the posterior segment of the right lobe of the 
liver is stable and likely represents a hemangioma. The
spleen, pancreas, adrenal glands and kidneys appear normal.
No free fluid is seen in the pelvis.

In the pelvis, no enlarged lymph nodes or mass is seen.
There is no change from the prior examination.

Cholecystectomy means surgical removal of the gallbladder. Hemangioma is a benign tumor consisting of a mass of small blood vessels.

November 19, 2003
My son's surgery went well. We got up at 4 am and arrived at the hospital by 6 am. The Children's Hospital parking garage does not open until later, so we had to park in the UPMC garage up the street. After meeting with the anesthesiologist and a nurse who took his vitals, we changed my son into a cute hospital gown and were taken upstairs to another waiting room, where a music therapist was playing the guitar and singing. He went in to the operating room at 7:30 am and was out about an hour later. He was groggy and disoriented from the anesthesia, but otherwise doing very well. We were discharged after several hours in recovery and post-op. I wanted to drop my wife and son off at home, but we had to go straight to the other hospital for my PET scan. Even though we were discharged with plenty of time to spare, it took us an hour to get out of the parking garage because of a traffic jam caused by three buses. I arrived a few minutes late for the PET scan, but they were waiting for me.

The PET scan took longer than usual because the machine started scanning in the wrong direction. Instead of scanning from the pelvis to the head, it scanned from the pelvis to the knees. It took two "slices" before I realized that something was wrong. So my full scan ran from my knees to my head.

The good news is I don't have cancer in my knees. ;-)

Also, my blood sugar level just before the PET scan was 79, which is normal. But that's to be expected, since I didn't eat breakfast or lunch today.

The technician let me look at the scans on the computer after the scan was over. There is something on the bottom right lobe of the lung. It could be part of the liver, or it could be part of the lung. If it's part of the lung, it might or might not be cancer. It measures 2.1 mm; 2.5 mm is the threshold for cancer. So it is unclear to me whether I have cancer metastases to the lung or something else.

The two most likely candidates for "something else" are Bleomycin-induced pseudonodules or scar tissue, both benign.

I'm meeting with my oncologist tomorrow morning, at which time the radiologist's report will be available.

After I got home, I realized that it would be helpful to have blood drawn now for tumor markers, so that the results would be available tomorrow to review in conjunction with the PET scan results. I called my oncologist's office and caught them just as they were leaving. They stayed late so that I could rush over and have my blood drawn. (I didn't have to pay for parking during the second trip because it took only 14 minutes from start to finish to have my blood drawn. The parking garage has a 15 minute grace period.)

November 20, 2003
Neither the tumor marker results nor the PET scan report were available when I arrived at my oncologist's office this morning.

My oncologist went over the CT scan with me, pointing out the anomaly identified by the radiologist. He said that based on the location, it was probably not metastatic testicular cancer. If it were lung metastases of testicular cancer, he would have expected it to be in a different location and distributed across both lobes.

Then he looked over a PET scan report that had been pulled from the computer, and said that the scan showed no evidence of FDG avid malignancy. He scheduled me for my next CT scan two months from now. I asked for and received a copy of the PET scan report.

When I got home I looked at the report and noticed that it was the report from my October PET scan, not the November PET scan. I called the office and the receptionist let the oncologist know that an old report had been pulled from the computer. It turns out that the November PET scan report was not yet available. They promised to call me as soon as they got the PET scan report.

I was on pins and needles all day. Around 4 pm I spoke with one of the oncology nurses. They had received my PET scan report and my tumor markers. Both were fine:

  • The radiologist who reviewed the PET scan reported "no evidence of FDG avid malignancy, with special attention paid to the right lower lung zone".
  • My beta HCG tumor marker was negative, meaning less than 5 mIU/mL (normal).
  • My AFP was 3.6 ng/mL. Normal is between 0.0 and 8.0.

The 2.1 mm anomaly I noticed while looking at my PET scan is part of the liver, not the lungs. Coupled with signs of fatty infiltration of the liver and slightly elevated ALT (SGPT) levels, it is most likely related to my diabetes.

The full PET scan report is as follows:

Following the IV administration of F18 FDG, a PET scan
was performed in transaxial, coronal and saggital
images obtained from the skull base to the mid thigh

Comparison is made to the most recent CT on 11/13/03
and the prior PET student with special attention paid
to the right lower lobe where a new subpleural nodule
was identified on the CT scan.

No abnormal signal is identified within the lungs,
specifically the posterior aspect of the right lower
lobe where the subpleural nodule was identified on the
CT scan. 

There continues to be moderately increased FDG activity
identified in the anterior abdomen superficially, in
the subcutaneous tissues close to midline. It is
unchanged from the prior study and may represent
inflammatory changes. Again clinical correlation is
recommended. No other abnormal FDG activity is noted on
this scan to suggest the presence of malignancy.

1. No evidence of FDG avid malignancy, with special
   attention paid to the right lower lung zone.
2. Moderate anterior abdominal uptake, superficially.
   Likely secondary to inflammatory changes with
   clinical correlation recommended. No change from the
   prior study.

The abdominal uptake is from the belly button incision from my cholecystectomy, which is still healing.

The bottom line is my cancer has not relapsed.

November 30, 2003
The tinnitus and hearing loss are still present and not improving. Also, my belly button incision is still not healing and has become mildly herniated. I've made an appointment with the surgeon who performed the cholecystectomy to have him take a look at it.

December 8, 2003
The doctor who performed the cholecystectomy says that the incision is not herniated, but instead is showing some granulation due to an infected stitch. He removed the stitch and told me to come back in a couple of weeks.

One of the stitches.

December 14, 2003
My tinnitus was worse this entire week because I had a bad cold. It was extremely distracting and interfered with anything requiring concentration.

According to the research literature, 20% to 25% of patients receiving cisplatin-based chemotherapy develop tinnitus and high pitch hearing loss that lasts at least two years after the end of treatment. (The hearing loss and tinnitus are bilateral and permanent.) The hearing loss is mostly above the speech range, although a small percentage of patients may experience hearing loss at the higher end of speech frequencies. Total cumulative dosage of cisplatin seems to be the primary risk factor, with about 20% of testicular cancer patients suffering from ototoxicity at standard dosages, increasing to 50% at 400 mg/m2. The severity increases with higher cumulative and higher individual doses.

Bleomycin can also cause ototoxicity, to a lesser degree. My hearing loss and tinnitus was caused by the cisplatin during the first week of chemotherapy.

There are a lot of snake oil "cures" for tinnitus on the web. None are effective, especially for the tinnitus caused by cisplatin. Current thinking is that the ototoxicity is caused by the loss of cochlear outer hair cells.

Practical advice is to avoid making the tinnitus and hearing loss worse. This means avoiding loud noise, caffeine and salt, as well as known ototoxic medications (see ifhoh.org and lhh.org). Some people suggest drinking lots of water can help reduce the severity of the tinnitus.

December 17, 2003
My fingernails have three "waves" corresponding to each cycle of chemotherapy. The waves are most apparent in my thumb nails. The first wave has reached the edge of my fingernail, and is very brittle. I've torn the edge of two fingernails perpendicularly and had to trim the nails back to prevent the tear from spreading.

December 22, 2003
Today was a follow-up appointment with the surgeon who performed the cholecystectomy. He removed the scab and says that the hole has shrunk. There was still some granulation, but he didn't see any more stitches coming out. He stuffed the granulation back in where it belongs and coated the incision with silver nitrate (stung a bit). He also tested my urine and said I was negative for glucosuria, meaning that I'm no longer leaking sugar into my urine. (My before-breakfast blood glucose level today was 123, and I did not have much for breakfast. Normal before-breakfast blood glucose levels are between 80 and 110, so I'm not too far off from normal.) He told me to come back in a couple of weeks.

December 30, 2003
Several people have asked me about scholarships for cancer survivors, since I'm the publisher of FinAid, so I added a new page to FinAid to provide information about Cancer Scholarships.

January 5, 2004
Another follow-up appointment with the surgeon who performed the cholecystectomy. He removed the scab and two more stitches, stuffed the granulation back in, and cauterized the incision and some seepage in the belly button. Since there were a total of five stitches, that means there's one more stitch that will probably need to come out.

January 18, 2004
I woke up with nausea, vomitting, diarrhea, fever (101.5), headache, tingling/numbness in the feet and back pain. Since my wife also had the first four symptoms, I'm assuming that it was a case of food poisoning. I called the oncologist on call just in case, and he concurred, but said I should monitor my temperature and call again if they get worse.

January 19, 2004
I heard from my urologist today. He was just back from a urology conference, where he heard about a paper that shows a statistical correlation between microlithiasis in the contralateral testicle and carcinoma in situ. Both of my testicles originally showed microlithiasis. He says that the significance of carcinoma in situ is unclear (i.e., it isn't clear whether it develops into testicular cancer), but he thinks it would be wise to have a testicular ultrasound every six months to monitor for changes in the microlithiasis. The odds ratio for the contralateral testicle harboring carcinoma in situ is 28.6 times higher among testicular cancer patients with contralateral microlithiasis than among testicular cancer patients without contralateral microlithiasis. Three quarters of TC patients with contralateral microlithiasis harbored carcinoma in situ in the contralateral testicle. (The paper is: Holm M, Hoei-Hansen CE, Rajpert-De Meyts E, and Skakkebaek NE, Increased risk of carcinoma in situ in patients with testicular germ cell cancer with ultrasonic microlithiasis in the contralateral testicle. Journal of Urology 170(4 Pt 1):1163-7, October 2003.) Another paper, published by Rorth in 2000, indicated that ultimately all carcinoma in situ transforms into testicular cancer, with 50% transforming within 5 years and 70% within 7 years.

January 21, 2004
I had my bimonthly CT scan and semi-annual testicular ultrasound of the contralateral testicle today. I also had blood drawn for tumor markers. Since I arrived early, they were able to stagger the radiological exams, performing the ultrasound after I had drunk the barium sulfate solution but before it had congealed.

The CT scan went well. I had a very good blood return on the first try this time, and no blow outs either.

January 26, 2004
I met with my urologist today to review the results of the testicular ultrasound for the contralateral testicle. He said that the ultrasound was unchanged. There was no evidence of focal parencymal lesion within the testicle. It still shows the same amount of microlithiasis, and the small 3 mm epidymal cyst was unchanged in size or appearance. The size of the testicle itself (4.1 x 2.4 x 3.2 cm) is normal.

He wants me to have another ultrasound six months from now, in July or August. Essentially, I'm at high risk for carcinoma in situ because of the contralateral microlithiasis, so the best approach is to monitor for contralateral testicular cancer through monthly testicular self exams and semi-annual testicular ultrasounds.

January 29, 2004
I met with my oncologist today. The tumor marker results were all normal, with an AFP of 1.3 ng/mL (normal is 0 to 8) and beta-HCG of <5 (normal is <10). My blood glucose levels were also 94 mg/dL (normal is currently 65-109, but this will be changing to 65-99 per the November 2003 recommendations from the ADA).

ALT (SGPT) levels continue to be elevated. This time they were 76 (normal is 0-40), up from 64 in November, and 37 in August. This is considered mildly elevated, and is probably related to the diabetes.

My CT scans were also fine, showing no signs of metastatic disease or disease progression. The full report is as follows:

A routine CT of the chest, abdomen and pelvis was performed,
scaning from above the lung apices through the pubic
symphysis after the administration of oral contrast and
intravenous Optiray.

FINDINGS: Comparison is made with previous examination of

CHEST: The lung parenchyma is unremarkable with no definite
evidence of pulmonary nodules. There is no airspace
disease. No pleural effusions are present. The
tracheobronchial tree is intact. There is no mediastinal,
hilar or axillary lymphadenopathy.

ABDOMEN: The liver is normal in morphology without focal
masses or biliary ductal dilatation. There are clips in the
gallbladder fossa and the gallbladder has been surgically
removed. The pancreas, adrenals, kidneys and spleen are
unremarkable. There is no abdominal free air, free fluid or

PELVIS: The small and large bowel are normal in caliber
without dilatation or obstruction. Again visualized is
aortocaval lymph node which is unchanged from the previous
examination. No new lymph nodes are identified. There is no
evidence of progression of disease. Previously noted left
external iliac and small inguinal lymph nodes are stable in




Since my company's new health insurance carrier considers Presbyterian Hospital to be in-network, my oncologist wants me to go there for my next CT scan in two months, to get a PET-CT. A PET-CT scan does both a PET scan and a CT scan simultaneously and can yield additional information, as the two scans complement each other.

January 31, 2004
My application for additional life insurance coverage through my employer was declined by Unum Life Insurance Company of America. The stated reason was due to my recent history of testicular cancer. This decision only affects the medically underwritten portion of my request and does not affect the coverage for which I was previously approved under my employer's life insurance plan.

February 16, 2004
I had another appointment with the surgeon who performed the cholecystectomy. He was able to grab the last remaining stitch, but it was so firmly connected that he couldn't pull up enough of it to cut it. So he used silver nitrate to cauterize it and said that probably in a month or two the stitch will come out enough that he can remove it. He said that a quicker alternative might be to have me come in for surgery, where he'd make an incision, remove the stitch, and patch me back up. But we'll wait another month or two before resorting to that.

I also saw my headache doctor (Dr. Soso). He said if I continue losing weight it should help with the morning headaches, and gave me a prescription for Amerge (naratriptan) for the migraines. He also suggested having my wife use a pulse oximeter to measure my blood oxygenation level when I snore or snort during my sleep. He said to see him again in 18 to 24 months.

February 21, 2004
My oncologist's office says the insurance will only cover a CT scan for my next surveillance visit, not a PET-CT. So instead of going to Presbyterian Hospital for my next radiological exam, I will go to West Penn Hospital as usual.

February 26, 2004
I've been showing some signs of testosterone deficiency, such as night sweats, diminished libido since the orchiectomy, increased irritability, and a persistent decrease in strength despite exercising. I also sleep more than I did before the orchiectomy, but my mood is unchanged. A slight difficulty concentrating might be related to this in addition to the tinnitus. I've also noticed an increased tendency to make valid word spelling errors (i.e., "principle" vs "principal"), especially involving context priming of phonologically similar words (i.e., "child" instead of "college" where "parent" was in the context). I have also had minor short-term memory lapses, such as forgetting a number when my concentration is interrupted. I used the ADAM test (Androgen Deficiency in the Aging Male) and it indicated a possible testosterone deficiency for me. During my next meeting with my oncologist I'll ask him to have my testosterone levels checked.

Long-term potential consequences of low testosterone, besides a reduced risk of prostate cancer, include loss of muscle mass, increase in body fat, and osteoporosis.

March 19, 2004
The peripheral neuropathy has changed within the last week or so. Originally, the peripheral neuropathy was a flaring in my hands and feet. It then changed to a numbness, and then normal sensation overlayed with numbness. Recently, however, there has been a tingling in my feet. The tingling is in the front and toes of each foot and on the outer side (i.e., the right side of the right foot and the left side of the left foot). It feels sort of like the way a foot does when it has gone to sleep and is starting to wake up. I feel it all the time now, but it is more intense after I get up after sitting for a while (i.e., after sitting during a plane flight). The pads on the thumb, middle and index fingers of both hands remain numb, although the middle finger on my left hand has a little more sensation. (That's the finger I use most often for blood glucose testing.)

My other long-term side effects remain unchanged. I still have the high pitch hearing loss, and the tinnitus is as loud as ever (and louder when I'm in a supine or prone position). I still have occasional nausea. The diabetes has been improving, mostly because I've changed my diet. I still have fatigue and a lack of strength, despite exercising every night (20-40 miles on an exercise bike or stepper, and half an hour with weights for my arms). The belly button incision continues to ooze. (I'm seeing the surgeon again on Monday. Hopefully he'll be able to remove the last remaining stitch. Otherwise I may opt for surgery to remove the stitch.)

I got a bill for the January CT scan. It indicates that they have not been paid for the CT scan by my insurance. But my insurance company's web site indicates that they paid the claim. So I'll have to make a few phone calls on Monday to straighten this out.

March 22, 2004
I had three appointments this morning. The first was with the surgeon who performed the cholecystectomy. He was able to remove the last stitch. It hurt a bit, since he had to cut the bottom of the stitch in order to remove it. But it's out, and that should be the last of the stitches. I have a followup appointment scheduled for a month from now, to make sure that the incision is healing over now and not continuing to drain.

Then I had blood drawn for tumor markers and for checking my testosterone levels.

After that, I had a CT scan. It went well. I'm actually getting used to the barium sulfate drink. I was able to drink the two jugs without thinking about how bad it tastes. This time the nurse put the IV into my right forearm. It hurt a little, but it had good blood return. There was the same metallic taste in my mouth and the same hot feeling (must be what food feels like when it is being nuked in a microwave). Afterward, I stayed near a bathroom until the barium sulfate solution decided to flush out the tush.

March 25, 2004
I got my blood tests back today. The tumor marker results were all normal, with an AFP of 2.1 ng/mL (normal is 0 to 8) and beta HCG of <5 mIU/mL. My blood glucose levels were 86 mg/dL (normal is 65-99); I had not yet eaten that morning.

My testosterone levels were 261 ng/dL (normal for men is 241-827, with most men my age in the 600s). So I'm at the low end of the normal range. However, they didn't check LH, FSH and Prolactin, which are used to determine whether one's body considers the testosterone levels to be normal. If FSH and LH levels are elevated while testosterone levels are low or low normal, that's an indication of a problem with testosterone production in the testis. I've asked my oncologist to check LH, FSH, SHBG and Prolactin levels as well. (Normal levels for Prolactin are 2.1 to 17.7 ng/ml, FSH are 0.9 to 15.0 MIU/ml, and LH are 1.3-12.9 MIU/ml. Normal estradiol levels are less than 54 pg/ml. Of course, what is normal depends on the assay used by the lab; another lab indicates a normal range of 1.4 to 18.1 MIU/ml for FSH.)

ALT (SGPT) levels continue to be elevated, but they were lower than January and November. This time they were 57 (normal is 0-40), compared with 76 in January, 64 in November, and 37 in August. This is considered mildly elevated, and is probably related to the diabetes.

My white blood cell counts were 7.1 (normal is 4.0-10.5). My red blood cell count was 5.13 (normal is 3.80-5.10). My hemoglobin was 15.3 (normal is 11.5-15.0). My hematocrit was 45.2 (normal is 34.0-44.0). The slight elevation in these counts is nothing to be concerned about. The values would be normal using the reference intervals that were used in January. I was incorrectly listed as female on this report, and I believe they used the wrong intervals for comparison.

March 31, 2004
I used a home cholesterol test kit to measure my total cholesterol. It indicated that it was 160. If so, that is a significant improvement. At my next PCP appointment, I'll ask him to do a fasting lipid profile to double check this result.

April 1, 2004
A Pennsylvania insurance broker that specializes in cancer called me to try to sell me a life insurance policy. Turns out that no insurance company will insure testicular cancer survivors until they are one year past the end of treatment. (Most require one to be at least two years past the end of treatment and symptom-free for the entire post-treatment period.) At that point it would cost me $4,500 for $500,000 in coverage, taking into account both my cancer and diabetes. That represents 10-20 times the rates for someone without a cancer history.

I've heard that insurance rates for testicular cancer survivors at the five year mark (when surveillance appointments drop to one a year) are about four times those for men with no history of cancer. Typically an insurance company will place cancer survivors in their worst rating tier, and also include a surcharge that depends on the number of years since the end of treatment. The surcharge goes away with time, but not the rating.

Another possibility is to ask the American Cancer Society (1-800-227-2345) about the high risk pool. Each state has a high risk pool for residents who have difficulty getting insurance.

Good articles on this topic can be found at insure.com and smartmoney.com.

April 5, 2004
My CT scans and tumor markers are all normal. My oncologist has decided that my CT scans should now be every four months instead of every two months, so my next CT scan will be scheduled for July.

With regard to the low testosterone issue, although my testosterone was low normal (261 ng/mL), my FSH was 7.7 mIU/mL (1.4 - 18.1 normal), my LH was 2.7 mIU/mL (1.5 - 9.3 normal), and my Prolactin was 3.3 ng/mL (2.1 - 17.7 normal). Since my FSH and LH levels were normal, not elevated, my oncologist says that I am not suffering from testosterone deficiency, per se. He says that it is normal to have lower testosterone with only one testicle, but that my body will gradually adjust and I should give it time.

April 8, 2004
I bought a body composition analyzer (a kind of fancy body fat analyzer, based on electrical impedence). It indicated that I'm overweight (no surprise, as I'm about 25 pounds heavier than I should be). My Bone Mass Index was 104 (5.23 lbs), which is normal. My body water was a little low at 50.6% (88.09 lbs), but I had just exercised. My body fat was 25.1%, which is 4.1% above ideal. My muscle mass was 92.41 lbs, which is 14.2 lbs below ideal. My basal metabollic rate was 1827 kcal.

I also got a Metrika A1C Now single use home test kit for hemoglobin A1C and used it to measure my hemoglobin A1C. The result was 5.1%, which is normal. A hemoglobin A1C result of 5.1% corresponds with an average blood glucose level of 100-110, which is where I've been for a while.

April 14, 2004
I had a regular doctor's appointment earlier this week. My doctor had blood drawn for Hemoglobin A1C, Hepatic Function Panel, and Lipid Panel. My Hemoglobin A1C was 5.5%, a little higher than the home test kit, but still excellent. My cholesterol was 216 (normal is under 200), HDL was 52 (normal is over 40, but over 60 is desirable), LDL was 141 (normal is under 130), Cholesterol/HDL was 4.2 (normal is under 5.0), and triglicerides was 114 (normal is under 150). Even though this is an improvement over the previous levels, my doctor wants me to start taking Zocor and baby aspirin.

The hepatic function panel was all normal. In particular, my ALT levels were 29, which is far better than the levels reported by my oncologist two weeks before. Albumin was 5.1 (normal is 3.7 to 5.1).

My doctor wants to start me on Zocor and baby aspirin. I want to confirm the cholesterol results first. (I ran another home cholesterol test today and it came back with total cholesterol 168, so I'm wondering about the accuracy of the higher results.)

My doctor prescribed ketoconazole shampoo for some dermatitis just above my eyebrows. This dermatitis started during my chemotherapy, but had recently gotten worse. I had never had any dermatitus or eczema before.

April 19, 2004
The surgeon examined the drainage site in my belly button, and said that it is about 95% healed. He scheduled a follow-up appointment for two months from now, when it should be 100% healed.

April 21, 2004
I spoke with my PCP. He agrees that rather than take Zocor right now, I should continue with the weight loss and see if I can't resolve the high cholesterol through diet and exercise. After I've lost another 20 pounds, if my cholesterol levels are still high, then we'll consider taking Zocor (and maybe niacin too). I will be getting a Cardiochek cholesterol monitor to monitor my cholesterol levels every month or so. The Cardiochek monitor has test strips to check total cholesterol, HDL and triglycerides. LDL figures can then be derived through calculation using the Friedewald formula: Total Cholesterol = LDL + HDL + (fasting triglycerides/5).

When trying to control Cholesterol levels through diet, one should aim to eat less saturated fat and more unsaturated fat. Dietary cholesterol comes mainly from meat, poultry, fish and dairy products. Vegetables and fruit contain no cholesterol. Other dieting tips can be found in a UMass newsletter. HealthLink has a calculator for estimating an LDL cholesterol goal.

April 28, 2004
This evening, while I was in Chicago, my eyes started itching and burning. It was incredibly painful, and the whites of my eyes were completely red. I took some antihistamines and it cleared it up. Before the cancer, I would only get itchy eyes when I mowed the lawn, and the allergic reaction was never bad enough that I needed to take something for it. I wonder if this allergic reaction is somehow related to the chemotherapy?

May 7, 2004
My Cardiochek monitor arrived yesterday, so this morning I ran a fasting lipid test. My total cholesterol was 200, HDL 56, Triglycerides 94, and LDL (calculated) 125. Cholesterol/HDL was 3.6. I ran the test twice. The second time total cholesterol was 209, HDL 52, Triglycerides 96 and LDL 138.

I had another allergic reaction today, this time in Pittsburgh while walking the dogs. I took some antihistamines to solve the problem.

May 10, 2004
I had another allergic reaction today, again in Pittsburgh while walking the dogs in the park. I took some more antihistamines and it solved the problem, but I'm reluctant to return to the park because the reaction was so severe.

July 6, 2004
I had a CT scan and semi-annual ultrasound today, as well as a blood draw for tumor markers.

The hospital had a new type of barium sulfate oral contrast solution called CheeTah, but it tasted about the same as the previous oral contrast drink.

The first CT nurse had trouble finding a vein, hitting a tendon twice and a nerve once, and so a different nurse took over and took two tries to find a vein. It was probably due to inexperience, since the nurse at my oncologist's office took only one try to draw blood. But I did end up being a pincushion today.

I took at brief look at the ultrasound films, and they looked ok -- uniform gray except for white specs due to the microlithiasis. The ultrasound tech also examined the fossa to make sure that everything there was ok.

July 9, 2004
Another wisdom tooth bit the dust as a casualty of the chemotherapy. When the upper wisdom tooth crumbled because of chemotherapy, it chipped off part of the lower wisdom tooth. I didn't think much of it, since it seemed to still be functional. But during a recent dentist appointment my dentist said there was a hole in the tooth and that it should come out.

Today an oral surgeon extracted the tooth. He had to give me four shots of novocaine because I was still sensitive, but after the fourth shot I didn't feel a thing. (After the first two shots the numbness extended to the corner of my mouth, but my tongue was not at all number. The third shot brought the fuzziness to the midline of my face, but the tongue side of my gums was still sensitive. The fourth shot made everything numb. The oral surgeon said that I must have atypical nerve anatomy, or particularly sensitive nerves.) After that, the tooth came out quite easily, even though it was a lower wisdom tooth. A few wiggles with the right tool, and it popped right out. This was much easier than the removal of the upper wisdom tooth last year.

The oral surgeon had very good bedside manner and was thorough and careful. He was meticulous in reviewing the informed consent form with me, and had my blood pressure, pulse, and blood oxygenation level monitored automatically throughout the extraction. I was impressed. Dr. Wible even called me at home five hours after the procedure to see how I was doing -- to check whether the bleeding had stopped, whether the pain medication was working, and whether I had any questions.

So now I have only two wisdom teeth left. Two wisdom teeth and one testicle.

July 14, 2004
I met with my urologist today. He received copies of the reports for both the ultrasound and CT scans, and said that everything is fine. He gave me a script for fertility testing (semen analysis) since I'm about a year after the end of chemotherapy.

My urologist is moving his office to Butler, Pennsylvania, about an hour away. Since I only need to see him twice a year, I'll continue with him as my urologist. He will no longer have privileges at West Penn Hospital, so if I need surgery I'll have to switch urologists. But if surgery is necessary, I can switch to a different urologist at that time.

The text of the ultrasound report is as follows:

INDICATION: Left microlithiasis, history of seminoma in
the right testis, status post right orchiectomy.

FINDINGS: Testicular ultrasound was performed. Comparison 
is made with previous study of 1/21/04.

The right testis has been removed and there are no
remarkable findings in the right testicular fossa. The
left testis measures 4.3 x 2.3 x 2.2 cm. Tiny punctate
echogenic foci are present throughout the testis
consistent with microlithiasis. No focal nodules are
identified. There has been no significant change from
the previous study. The left epididymis is unremarkable
with the exception of a tiny epididymal cyst in the
head. A small amount of fluid is present in the scrotal


The text of the CT scan report is as follows:

CLINICAL HISTORY: Testicular carcinoma.

Comparison 3/22/04.

The patient received nonionic contrast due to diabetes

FINDINGS CHEST: The lungs are clear. No pleural or
pericardial effusions. No adenopathy or nodules. There
is a mild amount of residual thymic tissue in the
anterior mediastinum.

FINDINGS ABDOMEN: The liver, pancreas, spleen, adrenal
glands and kidneys are unremarkable. The gall bladder
has been removed.

FINDINGS PELVIS: A tiny aortocaval lymph node as well as
a left external iliac lymph node are stable. These are
subcentimeter in size. Benign appearing small inguinal
nodes are stable. The patient has had right orchiectomy.

No suspicious osseous lesions. A sclerotic focus likely
representing a bone islands, in the left iliac bone is




July 16, 2004
This morning I went to the local cryobank for semen analysis (fertility testing), as almost a year has passed since the end of chemotherapy. I should get the results back sometime next week. My understanding is that chemotherapy doesn't affect the ability of sperm to create a viable embryo, but that if the chemotherapy does have the potential to cause infertility by halting sperm production. So if there are any sperm in the sample, even at subfertile levels, they can potentially improve with time as my body recovers from the chemotherapy. But if there are no sperm in the sample, then the infertility is permanent.

July 19, 2004
The semen analysis showed a subfertile result of 16 million sperm per ml. Anything above 20 million is considered fertile.

On June 13, 2003, before chemotherapy, the cryopreservation results showed a concentration of 45 million sperm per ml.

A subfertile result does not mean that a pregnancy cannot be achieved, just that it may be less likely or may require artificial insemination. All other sperm paramters were normal, including forward progression, activity, round cells and agglutination.

July 26, 2004
One last stitch appears to be coming out through the drainage site in my belly button. So far it isn't infected, so I'm going to let it come out on its own. If it doesn't make any progress over the next few weeks, or gets infected, I will make an appointment with the surgeon to have it removed.

July 29, 2004
I had a routine surveillance appointment with my oncologist today. My oncologist's practice has moved into a new building, consolidating several locations. The building is very nice and shiny.

Everything was fine. As noted previously, my CT scan and ultrasound showed everything stable, with no signs of malignancy. My beta HCG was normal, as was my CBC.

My next appointment is in approximately 4 months, and will be scheduled for a week after my next CT scan.

August 11, 2004
Today I had a quarterly doctor appointment with my PCP for diabetes management. He said I look fine, and that I've lost 11 pounds since the previous appointment. He had blood drawn for hemoglobin A1C and thyroid.

August 17, 2004
I just got a copy of the lab report from my recent doctor appointment. My Hemoglobin A1C was 5.2%, a good value.

My TSH was 1.27 mU/L (normal is 0.40 to 5.50 for my age and sex) and my T4,FREE was 1.2 ng/dl (normal is 0.8 to 1.8 for my age). So I have normal thyroid function.

November 8, 2004
I had another CT scan today, along with a blood draw. I arrived at the hospital early, hoping that they'd be able to squeeze me in early, but they apparently got me confused with another patient and I ended up being scanned half an hour after my original appointment.

The receptionist, a nice little old lady, was no longer there. She apparently retired a few months ago. But the new receptionist was nice too, and handed me my usual two bottles of oral contrast.

This time the nurse was able to insert the IV the first time without problems. I had the usual metallic taste, but this time the sense of heat was confined to my right side. My hand felt particularly hot.

I think they scanned my kidneys and liver an extra time. I held my breath and didn't move, so I don't think it was because the images were blurry.

After the CT scan I drove to my oncologist's new office to have my blood drawn for tumor markers. The phlebotomist was at lunch (the delay in my CT appointment had spilled over into lunchtime), so I had to wait 40 minutes. Again the nurse was able to hit the vein the first time without problems. However, she shifted the needle after filling two vials and was not able to recapture the vein. Rather than stick me a second time, she transferred some blood from one vial to a third for use with the CBC, since she had enough blood.

November 12, 2004
The appointment with my oncologist went well. My tumor markers remain normal, with beta HCG under 5 and AFP of 1.6. My CT scan report was also good, showing no change. After the next four-month appointment, if everything remains fine he wants to switch me to a six-month schedule.

The text of the CT scan report is as follows:

HISTORY: Testicular cancer.
Comparison to prior study of 7/6/04.

A routine CT of the chest, abdomen and pelvis was performed, scanning
from above the lung apices through the pubic symphysis after the
administration of oral contrast and intravenous Optiray. 

CHEST: There is no intrathoracic adenopathy. No pleural or pericardial
fluid is noted. The lungs are clear.


ABDOMEN: The liver, spleen, pnacreas, adrenals and kidneys are
normal. The gallbladder has been removed. Small aortic caval lymph
node measuring approximately 5 mm in short axis is unchanged from
previous study. No enlarged lymphadenopathy is noted.


PELVIS: There is no evidence of bowel obstruction or bowel wall
thickening. Small left external iliac lymph node is unchanged from
previous study. No new lymphadenopathy is identified.


December 15, 2004
Today I had a quarterly appointment with my PCP to follow-up on my diabetes. He said that my diabetes is so well controlled by diet and exercise that we can reduce the frequency of the visits to twice a year. My hemoglobin A1C was 5.0%, in the non-diabetic range. My total cholesterol was 188, HDL 54, LDL 119, and triglicerides 74, with a 3.5 ratio of total cholesterol to HDL. So my cholesterol has also normalized through diet and exercise. Losing 50 pounds did the trick.

January 6, 2005
Another semi-annual testicular ultrasound. This is the first time one of my ultrasounds didn't coincide with a CT scan. The tech did the scans, with the usual measurements of the epidymal cyst and one or two other small densities. The testicle as a whole had the usual uniform gray with white specs from the microlithiasis.

January 13, 2005
This morning I saw the surgeon who performed the cholecystectomy a year and a half ago. I reported that my drainage site was still occasionally draining and bleeding, but no signs of an infection. This time, however, I could see the tail of a stitch poking out of the drainage site. The surgeon was able to grab it, cut the loop of the stitch, and remove it. Since that was the sixth stitch (he says that it is unusual for him to use more than five), this should be the end of it. He says that I shouldn't need to see him again, since the drainage site should now be able to heal properly.

January 18, 2005
I met with my urologist today for a semi-annual exam and to review the ultrasound. Everything was fine. He says that because my father has rising PSA scores, it might be a good idea for me to have my PSA score taken to establish a baseline. He also said that we should continue with semi-annual ultrasounds until I reach the three year mark, and then we'll switch to annual.

The text of the ultrasound report is as follows:


CLINICAL HISTORY: 37 year old male with testicular seminoma status
post right sided orchiectomy.

COMMENT: Realtime and color Doppler ultrasound of the scrotum was
performed. Comparison is made to the previous study done on 11/8/04.

The left testis is visualized. There is microlithiasis present. No
focal masses are present within the left testis. The left testis is
homogeneous, with the exception of the microlithiasis. There is a
small epididymal head cyst or spermatocele measuring 4 x 3 x 4
mm. There is a small hydrocele on the left. No testis is identified on
the right due to the patient's surgical resection. There is good flow
to the left testis.


March 14, 2005
I saw my oncologist today to review the results of my CT scans and tumor markers.

My tumor markers were all normal. My AFP was 1 ng/mL and my beta HCG was < 5 mIU/mL.

He also performed a CBC, with the following values: WBC 4.8, RBC 4.95, HGB 14.6, HCT 44.3, MCV 89.4, MCH 29.4, MCHC 32.9, Platelet 259, all normal. My other blood chemistry values were also normal. In particular, my ALT was 18 U/L, in the middle of the normal range.

The text of my CT scan report is as follows:

A routine CT of the chest, abdomen and pelvis was performed, scanning
from above the lung apices through the pubic symphysis after the
administration of oral contrast and intravenous Optiray.

Comparison 11/08/04.

FINDINGS: CHEST - There are a few small retrocrural lymph nodes, the
largest measures 1 cm short axis, not significantly changed. There is
no lymphadenopathy in the chest. No pulmonary nodules, pleural or
pericardial effusions seen.

ABDOMEN - The liver, spleen, pancreas, both adrenal glands, and both
kidneys are normal in appearance. Cholecystectomy clips noted. No
retroperitoneal lymph nodes greater than 1 cm; the retroperitoneum is
stable in appearance.

PELVIS - The appearance of the pelvis is unchanged. The subcentimeter
left external iliac lymph node described previously is stable. The
bowel is unremarkable. There is a well defined sclerotic lesion in the
left iliac bone which is unchanged. 




My next CT scan will be scheduled for six months from now.

Because I was experiencing severe Raynaud's phenomenon at the time of the appointment (my hands were bright red and my fingers were visibly swollen), my oncologist ordered additional blood tests to make sure it wasn't unrelated to the chemo. Depending on the test results, he'll refer me to a rheumatologist. He is also having my PSA levels checked to establish a baseline, because my father was diagnosed with prostate cancer last month.

April 18, 2005
My new primary care physician tested my blood glucose levels at 93 and my hemoglobin A1C at 5.7, both in the non-diabetic range. My microalbumin was also normal.

July 26, 2005
My urologist said that the ultrasound showed no changes. There is no change in the microlithiasis, nor in the epididymal cyst. He conducted a clinical testicular exam, and said that everything is fine.

Because my father was diagnosed with prostate cancer and my last prostate exam was two years ago, he conducted a prostate exam. He said that everything is fine, and that I have the prostate of someone half my age. He will check with my oncologist about the PSA test results, and if the PSA test wasn't done, will schedule an annual PSA test for me.

He believes that we should continue with ultrasounds at the same frequency as my CT scans, but offset by a few months. My next ultrasound will be in six months.

August 11, 2005
My urologist called my oncologist to obtain my PSA levels from my March 14 exam, and reports that they were 0.22. Anything less than 2 is normal for my age, so this was an excellent result.

September 7, 2005
I had my semi-annual CT scan today. My oncologist had scheduled the CT scan for the same hospital, so that I would be scanned using the same equipment and have my scans read by the same radiologist. However, West Penn Hospital just replaced all of their CT scan equipment with new Toshiba 64-slice CT scanners. These scanners have 16 times the resolution of the conventional 4-slice CT scanners they used previously.

A conventional CT scan has a slice thickness of 8 mm to 10 mm. A high resolution CT (helical CT, spiral CT, HRCT) has a slice thickness of 1 mm to 1.3 mm and can image about 40 slices simultaneously. The Aquilion has a slice thickness of 0.5 mm (with contrast) and can image 64 slices simultaneously. Without contrast the resolution is 2 mm.

They still gave me oral and IV contrast for my scan, and they still had the "hold your breath" announcement during the scan, although the scan ran much more quickly (about 10 times faster). They also changed the procedure a bit; instead of having the IV inserted while I was on the scan table, they had it inserted in advance. (I guess they are trying to schedule the use of the equipment more efficiently. Given that the scans are quicker, more of the time is taken up by inserting the IV. By pipelining the IV insertion, they are able to schedule more scans per hour. The radiology waiting room was fuller than before.)

A common problem with high resolution CT scans is the higher resolution doesn't always increase the accuracy. Often the higher resolution means the CT scan detects more artefacts that ultimately turn out to be benign. It will be interesting to see if the even higher resolution of the Aquilion CT scan results in even more false positives. (The technician commented that they are often using the new CT scanner to resolve questions that arise from the use of their PET-CT scanner.)

Toshiba Aquilion 64-slice CT scanner

September 19, 2005
I met with my oncologist today. He reported that my tumor markers and CT scan results were both normal, no sign of cancer. He suggested that I should see an endocrinologist, partly because of the diabetes and partly because of the low testosterone. (The CT scan did have an incidental finding of gynecomastia.)

The AFP levels were 2 ng/mL (normal is 0-6) and the beta HCG was <2 mIU/mL (normal is 0-9).

The text of my CT scan report is as follows:

INDICATIONS: Testicular cancer.

A routine CT of the chest, abdomen and pelvis was performed, scanning
from above the lung apices through the pubic symphysis after the
administration of oral contrast and intravenous Optiray. Comparison is
made to 3/7/05.


CHEST: The lungs appear clear. There are no pulmonary nodules. There
are no pleural or pericardial effusions. There is no suspicious
adenopathy within the chest. Incidental note is made of gynecomastia.


ABDOMEN: Cholecystectomy clips are noted in the right upper
quadrant. The liver, spleen, bilateral adrenal glands and kidneys
appear normal. The pancreas appears normal without evidence of
pancreatic ductal dilatation. There is no suspicious adenopathy within
the abdomen.


PELVIS: The large and small bowel appear normal. There are no
inflammatory changes or fluid collections in the pelvis. There is no
abnormal adenopathy in the pelvis. The right testicle and right
spermatic cord are surgically absent.


November 17, 2005
I saw my endocrinologist today for the first time. She confirmed the gynecomastia, but said that it was fairly mild (i.e., very little breast tissue). She's ordering a pretty full workup: comprehensive metabolic panel, lipid panel, c-peptide, FSH/LH, Hemoglobin A1C, Prolactin, Testosterone (Free), Testosterone (Total), TSH, T4 (Free), microalbumin/protein/creatinine ratio, estradiol, Quant HCG, and AFP.

December 22, 2005
I had my semi-annual ultrasound today. Since the radiologist was out for the holidays, they will not be able to give me the films until next week.

December 29, 2005
I picked up the ultrasound images today. Instead of giving me films, they gave me a CD-ROM with both the current images and the images from June.

The December ultrasound shows the epididymal cyst to measure 0.28 cm by 0.28 cm by 0.36 cm. The June ultrasound shows the epididymal cyst to measure 0.27 cm by 0.26 cm by 0.32 cm. The difference in size is not significant. In both cases this would be reported as a 3 mm by 3 mm by 3-4 mm cyst.

The December ultrasound also shows the testicle as measuring 2.30 cm by 4.92 cm by 3.24 cm, compared with the June ultrasound measurements of 2.42 cm by 4.72 cm by 3.25 cm. The differences are insignificant.

Both ultrasounds show similar levels of microlithiasis and uniform density. I believe that the radiologist's report will indicate no change and no sign of malignancy.

January 31, 2006
I saw my urologist today. The ultrasounds were normal: no sign of malignancy, the microlithiasis is unchanged in amount and distribution, and the epididymal cyst is unchanged in size. My PSA was 0.22, unchanged, and an excellent result.

I also heard from my endocrinologist that my total testosterone was 255 ng/dL, free testosterone 60.1 pg/mL (normal 35.0 - 155.0), and that my estradiol was 13 pg/mL (normal 10-50). FSH was 4.7 mIU/mL (normal 1.0 - 18.0), AFP was 1.7 (normal < 6.1), beta-HCG was <1, Prolactin 5.0 ng/mL, and LH was 4.1 mIU/mL. The percent free testosterone was 2.36% (normal 1.0% - 3.1%). All values are within the normal range, although the testosterone is at the low end of normal. TSH was 1.43 (normal 0.35 - 5.50) and Free T4 was 1.2 (normal 0.9 - 1.8).

Other results from my endocrinologist include blood glucose of 117 mg/dL (normal is 75 to 100) and hemoglobin A1C of 6.0 (normal 4.8 - 6.0). Cholesterol was elevated at 236 mg/dL (normal 10-199) with triglycerides of 121 and HDL of 57 and LDL (calculated) of 155. ALT (SGPT) was 77, above the normal range of 30-65. C-Peptide was 3.1 (normal 0.8 - 3.1).

February 13, 2006
I had my semi-annual CT scan and tumor markers blood draw today.

There is something worse than berry-flavored barium sulfate solution. It is pina-colada-flavored barium sulfate solution. The stuff tasted so bad I wanted to vomit, and the rest of the day my bowels were complaining.

February 20, 2006
I met with my oncologist for my semi-annual appointment. My tumor markers were normal (AFP 2 ng/mL, beta HCG < 2 mIU/mL). My CBC was normal: WBC 6.6, RBC 5.27, HGB 15.2, HCT 46.9, MCV 89.0, MCH 28.8, MCHC 32.4, and Platelets 275.

The 2/13/06 CT scan also showed no sign of metastatic cancer:

Technique: A routine CT of the chest, abdomen and pelvis was
performed, scanning from above the lung apices through the pubic
symphysis after the administration of oral contrast and intravenous

Indication: Testicular cancer.

Comparison: 09/07/05.

Chest Findings: The lungs appear clear without evidence of pulmonary
nodule. There are no pleural or pericardial effusions. There is no
suspicious lymphadenopathy within the chest. The bones and soft
tissues appear normal.


Abdomen Findings: The liver, spleen, bilateral adrenal glands and
kidneys appear normal. Within the tail of the pancreas there is a 1 cm
increased attenuation nodule which appears stable compared to previous
study. Cholecystectomy clips are present within the right upper
quadrant. There is no suspicious lymphadenopathy within the abdomen.


Pelvis Findings: There are no abnormally enlarged lymph nodes within
the pelvis. There is a well-defined sclerotic lesion in the left iliac
bone, which is also stable in appearance. There are no abnormally
dilated loops of small or large bowel. There are no inflammatory
changes or fluid collections within the pelvis. The right testicle and
spermatic cord are surgically absent. 


We also discussed my Raynaud's Phenomenon and occasional mild back/hip pain. The back pain is unlikely to be related to the cancer, since it is symmetric and mild and the onset was long after the end of chemotherapy (i.e., no possibility of femoral head necrosis). He offered to order a lower back MRI if the back pain got worse. He also gave me the name of a rheumatologist for the Raynaud's.

August 7, 2006
I had my semi-annual CT scan today. The barium sulfate solution tasted a bit sour and was harder to get down than usual. The nurse was new and had trouble starting an IV. She tried five times (including twice hitting a nerve) before giving up and letting another nurse do it. The more experienced nurse took two tries. She first tried in my forearm, but that one wouldn't flush. She then kept talking about how fat and puffy a vein on the back of my hand was, until I relented and allowed her to use it. Of course, she went through a nerve to hit the vein; the veins on my hands are right next to the nerves. (At my oncologist's office later that day, the phlebotomist took only one try to get blood for tumor markers. But then again, it is a thinner gauge needle.) So I ended up looking like a pincushion, with a half dozen pieces of white gauze taped over my wounds.

The barium sulfate solution didn't sit very well with me. I had extremely loud bowel sounds and had to stay near a bathroom for the rest of the day. I also felt a bit nauseous from it. I wonder if it had somehow 'turned'.

August 8, 2006
I had my semi-annual ultrasound today. When I showed up for my appointment they had me preregistered, but not appointment was scheduled. Apparently they had moved the ultrasound room since I made the appointment and forgot to move the appointment, so I was scheduled for a nonexistent room. I had to wait 1.5 hours while they squeezed me into the schedule. Then I walked over to the new facility, where they temporarily had lost my paperwork. Other than that, the ultrasound was fine.

The testicle is a uniform gray with the amount of microlithiasis apparently unchanged. The testicle measured 2.16 cm by 4.82 cm by 3.25 cm, compared with the December measurements of 2.30 cm by 4.92 cm by 3.24 cm. The slight decrease in size is within the realm of operator variability. The epididymal cyst measures 0.07 cm by 0.10 cm by 0.13 cm, which is definitely smaller than before.

August 14, 2006
I met with my oncologist today. My CT scans and tumor markers are all normal. We will continue with the semi-annual surveillance schedule until I reach the 5-year mark.

My CBC from August 7, 2006 was as follows: WBC 7.2, RBC 5.25, HGB 15.7, HCT 46.9, MCV 89.4, MCH 29.9, MCHC 33.5, Platelet 275, all normal.

My tumor markers were Beta HCG < 2 mIU/mL (0-9 is normal) using the Bayer Centaur/ACS methodology, and AFP 2 ng/mL (0-6 is normal) using the DPC Immulite methodology.

The text of the CT scan report was as follows:

TECHNIQUE: A routine CT of the chest, abdomen and pelvis was
performed, scanning from above the lung apices through the pubic
symphysis after the administration of oral contrast and intravenous

CLINICAL HISTORY: Testicular carcinoma follow-up examination.

COMPARISON: 02/13/06

CHEST FINDINGS: There is no mediastinal or hilar lymphadenopathy. The
lung parenchyma is normal in appearance. No pericardial or pleural
effusion seen.

ABDOMEN FINDINGS: There is diffuse fatty infiltration of the liver. No
focal lesions or biliary dilatation. The spleen, pancreas, both
adrenal glands and both kidneys are normal in appearance. There is no
retroperitoneal lymphadenopathy and no ascites is seen.

PELVIS FINDINGS: No pelvis lymphadenopathy. Sclerotic lesions left
iliac crest is stable, likely a bone island. 




August 15, 2006
The appointment with my urologist was routine, a dip strip test of a urine sample, a review of the ultrasound results followed by a clinical testicular exam. Everything is fine.

The text of the ultrasound report was as follows:

CLINICAL HISTORY: Follow-up microlithiasis, left testicle.

FINDINGS: The right testicle is surgically absent.

There has been no change in the microcalcifications in the left
testicle. No mass is seen in the left testicle. A small amount of
fluid is seen around the testicle. The left epididymis shows normal
size. There is again noted a small cyst in the epididymal head,
measuring 2 mm on the current study. A left varicocele is

1. No change in the microlithiasis of the left testicle.
2. Small amount of fluid around the left testicle.
3. No evidence of lest testicular mass.
4. Right testicle is surgically absent.

January 2, 2007
I met with my oncologist today to review the results of my tumor markers and CT scans from December 21, 2006.

The tumor markers showed beta hcg less than 2 mIU/mL and AFP of 2 ng/mL, both normal. The CT scan showed no sign of metastatic cancer in the chest, abdomen and pelvis.

However, the CT scan shows a 1 cm mass in the tail of the pancreas that is consistent with a nonfunctional neuroendocrine tumor. A review of the original staging CT scan from 5/30/03 shows the tumor unchanged. It is surprising that the radiologists did not notice this sooner (I've had 12 CT scans before this), especially given the history of pancreatitis and gall stones.

Given this finding and my history of pancreatitis, gall stones, and diabetes, my oncologist scheduled an MRI of the pancreas for Thursday.

If the mass is confirmed as a nonfunctional neuroendocrine tumor of the pancreas, likely treatment will involve surgical resection. Five year survival for this form of pancreatic cancer is 50%. However, mine is small and apparently indolent, and there does not appear to be any metastasis, so the odds are possibly more favorable.

My CBC was mostly normal, with AST elevated at 39 U/L (normal is 5-34), ALT elevated at 65 U/L (normal is 10-40), and blood glucose elevated at 120 mg/dL (normal is 70-105).

The text of the CT scan report is as follows:


The following is the interpretation of the teaching physician whose
signature is below:

INDICATION: Testicular cancer.

COMPARISON: CT chest, abdomen and pelvis from 8/7/06 and 5/30/03

A routine CT of the chest, abdomen and pelvis was performed, scanning
from above the lung apices through the pubic symphysis after the
administration of oral contrast and intravenous Optiray.


CHEST: The lungs are clear with no pleural effusion or
pneumothorax. There is no abnomal lymphadenopathy within the
chest. There is no pericardial effusion. The heart and intrathoracic
aorta are normal in appearance. Osseous structures of the chest are
also normal in appearance.

ABDOMEN: There is diffuse, fatty infiltration of the liver. There has
been prior cholecystectomy. The spleen, adrenal glands and kidneys are
normal in appearance. There is a 1 cm hypervascular mass in the tail
of the pancreas which is likely consistent with a nonfunctioning
neuroendocrine tumor. In retrospect, this lesion appears unchanged as
compared to study from 5/30/03. There is no abnormal lymphadenopathy
or fluid collection in the abdomen.

PELVIS: Multiple loops of bowel are normal in caliber with no evidence
of wall thickening or obstruction. There is no abnormal
lymphadenopathy within the pelvis. There are no pelvic fluid
collections. There is stable, well circumscribed sclerotic lesion of
the left iliac bone which is likely on the basis of a bone island and
is unchanged from prior study. Bones are otherwise normal in




January 4, 2007
I had an MRI of the pancreas today (along with bits of the liver of spleen).

This was the first time I had an MRI. After completing a questionnaire about previous surgeries and numerous questions that all asked whether there was any metal in my body (answer: just some clips from prior surgeries), they repeated the questions in an interview just to be sure. I then changed into hospital pants (regular pants have too much metal in the zipper and snap) and put all my belongings into a locker, including anything with metal (keys, cell phone, rings, watch).

The machine looks pretty much like the doughnut they use for a CT scan or PET scan, although the doughnut hole is a little snugger fit. They had a nice 3x3 grid of ceiling tiles that looked like blue skies with fluffy clouds to stare at before they slid you into the MRI. They felt for the bottom of my rib cage and the top of my pelvis for positioning, and had me skootch back an inch so that everything was lined up. They inserted the IV for the IV contrast in my right arm, taping it in several places so that it wouldn't move, and coiled the tube around by thumb twice (and taped it down as well). They placed a 'coil' on my chest to help focus and transmit the MRI information and strapped it down, turning me into a turtle. Before sliding me into the MRI, they put earphones on my head (tuned to an oldies/country music station) and a panic squeeze bob in my left hand. The sound quality on the earphones was pretty bad, but it helped dull the shrieking/banging sound of the MRI as it fired up. They also delivered the "take a deep breath" and "hold your breath" instructions through the earphones, although sometimes I missed the first part and had to breathe in in a hurry. They had me hold my breath for 30-60 seconds, which was stretching it with the coil on my chest. One time I think they forgot to tell me to breathe again. The IV contrast felt cool as it slid up my arm (if I had synethesia, I'd say it felt like silver of mercury), but turned hot as soon as I felt the metallic taste in the back of my mouth. The MRI was very loud, making a "braaaaaack" sound that varied a little in pitch and speed, and my nose itched the entire time. My shoulder was stiff by the time they were done.

January 10, 2007
I had a frustrating wait to hear the results of my MRI. The report was faxed to my oncologist on January 5, but his patient load was high enough that he didn't get around to reading charts until January 10.

The text of the MRI report is as follows:


Testicular cancer. Patient has an outside CT that is not available to
me, but the report mentions a centimeter sized intensely enhancing
mass in the pancreatic tail.

T-2 coronal and axial, T-2 fat saturated axial, T-1 in and out of
phase axial and T-1 fat saturated axial pre- and post-Gadolinium
injection. These were taken after five minutes and the scans were done
through the pancreas.

There is a normal appearing pancreas on the breath-hold T2-weighted
axial series with no evidence of a high signal mass in the pancreatic
tail. On the T1-weighted series, there was a focal area of decreased
signal in the pancreatic tail measuring approximately a centimeter
(series 6, image 24 and series 7, image 15). This nodule becomes
isointense on the immediate arterial phase and becomes visible as a
separate nodule at one, three and 5 minutes. On the five minute film
it has a somewhat bilobed appearance, with a slight bulge into the
peripancreatic fat dorsally and superiorly (series 12, image
15). There is no evidence of pancreatic ductal dilatation and the
remainder of the pancreas is unremarkable. No peripancreatic
inflammatory changes are identified. The adjacent splenic vein was
unremarkable, as was the spleen.

There was extensive signal drop in the liver in the out of phase
images, compatible with extensive fatty infiltration. The patient is
status post cholecystectomy. No intra or extrahepatic biliary ductal
dilatation was seen. The adrenal glads and visualized kidneys are
unremarkable. No retro or intraperitoneal adenopathy was identified
and the celiac axis and SMA appeared clear.


I found a reference that indicates that resection of localized primary tumor has a 5-year survival rate of 72% with a median survival of 6.8 years. (See Douglas B. Evans, et al, Nonfunctioning islet cell carcinoma of the pancreas, Fourteenth Annual Meeting of the American Association of Endocrine Surgeons, Williamsburg, VA, April 25-27, 1993.) This compares with the overall 50% five-year survival figures reported by other researchers.

January 15, 2007
I dropped by my oncologist's office for some bloodwork. They drew blood to test for Chromogranin A (CgA), a marker for neuroendocrine tumors of the pancreas. They also gave me a container for 24-hour collection of urine for 5-HIAA testing.

I'm supposed to avoid eating bananas, avocados, plums, eggplant, tomatoes, plantain, pineapples and walnuts for a 72 hour period before and during collection (i.e., for 48 hours before and throughout the collection period). The collection starts in the morning, with the first urination of the day discarded (and the time marked). All subsequent urinations are collected and transferred to the collection container until the next morning. The collection container must be refrigerated. My wife wrinkled her nose when I told her I'd be storing urine in the refrigerator.

January 26, 2007
My Chromogranin A test came back 4 (normal). The 5-HIAA test came back as 5.5 (normal is 0 to 8.0).

February 19, 2007
I had my semi-annual urologist appointment today. The testicular ultrasound of the contralateral testicle showed stable microlithiasis with no sign of cancer. The urologist also gave me a clinical testicular exam, which was normal.

Total testosterone was 193 (normal is 250-1100), so I'm now officially testosterone deficient. However, free testosterone was 2.55 percent (normal is 1.0 to 3.1) and my FSH and LH were normal. Since I'm asymptomatic of testosterone deficiency and have a family history of prostate cancer, my urologist prefers to hold off on testosterone replacement therapy until it is clearly necessary. If I were to ask him for TRT he would prescribe it, but right now I'm comfortable with monitoring the testosterone levels (T Total and T Free, FSH and LH) on an annual basis. At my next semi-annual appointment I'll ask him about getting a bone scan to establish a baseline.

My PSA was 0.2 (excellent) and unchanged from a year ago. My prostate exam was normal ("the prostate of a man half my age").

My SGPT was 77, which is a little high (65 is the upper end of normal).

The text of the ultrasound report is as follows:

History of right testicular carcinoma. Follow up for left

The scrotal contents were scanned and the transverse and longitudinal

The right testis has been resected. The left testis measures 4.6 cm x 2.6 cm
x 2.8 cm. It contains numerous small calcifications. A left epididymal
head cyst measures 0.2 cm x 0.2 cm x 0.2 cm. A left hydrocele and a
left varicocele are present.

In the previous examination of 8/8/2006, the left epididymal head cyst
measured 0.1 cm. The varicocele and hydrocele were present at that time.


March 9, 2007
I thought I was having a PET scan today, but it turns out that my oncologist had ordered a PET-CT scan. That explains why it took so long for the insurance company to approve it. It was in the same trailer as was used for my PET scan in 2003, but with a new Siemen's Biograph 8 PET-CT scanner.

Getting to the hospital was a little roundabout. The 31st street bridge has been closed for a while for repairs, so normally I take the 16th street bridge. But I heard on the radio that there had been an accident on Liberty Avenue between 16th and 17th streets (apparently a 16 year old girl had been struck and killed by a car), and the police had shut down Liberty Avenue in both directions. So I had to drive all the way into Shadyside to approach the hospital from the south instead of the north. This made me arrive 10 minutes late for registration, but that didn't cause any problems.

My oncologist's office told me to show up on the third floor radiology. They should have sent me to the basement MRI department. But the ladies in radiology were able to register me and send me down to the basement.

I was escorted onto a platform lift on the side of the trailer (I guess they don't trust patients to walk up the stairs). Inside the trailer it was air conditioned despite an ambient temperature of 45 degrees outside.

First the nurse checked my blood sugar. She said it was 190, which is strange, since I checked it myself that morning and it was much lower. Given that I was fasting for the test, it should not have increased. In any event, it was below the 200 threshold.

The nurse was able to insert the IV in my left arm with just one poke. As with a PET scan, they inject you with mildly radioactive sugar (5-HTP). This time was a little different than the last time. This time involved an interesting syringe filled with saline. They first checked that I had good blood return, then screwed the metal cannister containing the radioactive sugar onto the side, and pulled back on the syringe before pushing in the plunger the inject the sugar. I guess it must have a one-way valve.

After 45 minutes they escorted me to a bathroom to empty my bladder, and then returned me to the trailer. I waited another 5 minutes before they were ready to scan me.

There were some nice improvements in the process. First, they had form-fitting pillows for my head and under my knees, so it was much more comfortable. When I raised my hands over my head as instructed, I found that the pillows even had indentations for my hands. They also didn't need to strap me into a cocoon, because the test was much quicker. The PET-CT has 8 detectors instead of 4, cutting the time in half. First they ran two quick passes for the CT scan portion, then one very slow pass with seven "segments" for the PET scan.

The technician said that my oncologist would receive the report Monday or Tuesday. He had already blanked the screen, so I couldn't sneak a peak at the scan.

March 12, 2007
I saw the gastroenterologist, Dr. Richard Kim, today. He will schedule me for an endoscopic ultrasound (EUS) with biopsy. He says this is the only definitive way of determining whether the 1 cm mass is neuroendocrine tumor of the pancreas, fibrotic tissue, or something else.

The endoscopic ultrasound is an outpatient procedure. They spray the back of the throat with a local anesthetic to block the gap reflex, and then administer a sedative. First a regular scope goes down the throat to look around, then it is replaced with the EUS scope. They will look at the pancreas through the wall of the stomach and take a needle biopsy.

Normally Dr. Kim would do the EUS himself, but his facility does not have the capability of taking a biopsy (EUS-FNA). So he will be scheduling me for the EUS with Dr. Dhawan at Allegheny General Hospital.

Dr. Kim's office was interesting. Instead of the usual aquarium of tropical or salt water fish, it has an aviary. The aviary was built by Living Design Inc., a company that builds aviaries for doctor's offices. This aviary had two doves, a canary, and eleven finches.

Aviary by Living Design Inc.

March 17, 2007
I received a copy of the report from Dr. Richard Kim, the gastroenterologist. I was impressed by the thoroughness and his automatically sending me a copy of the report without my needing to ask for it.

The text of the report is as follows:

Reason for Visit: Pancreatic mass.

History of Present Illness: Mark is a 39-year-old male seen in
consultation at Dr. Barsouk's request for evaluation of a pancreatic
lesion. Mark has a history of stage III seminoma treated with
chemotherapy and is now felt to be free of disease. He was noted to
have a one cm hyperechoic lesion at the tail of the pancreas dating
back as far as 2003. A recent CT scan confirmed this finding and has
been unchanged. He did undergo an MRI of the pancreas as well and it
confirms the presence of the lesion 16 mm from the tip of the tail of
the pancreas. He really has no symptoms. There are no episodes of
pain. He has no clinical episodes of pancreatitis. He has no systemic
symptoms. He denies any flushing. He denies any change in his
weight. His seminoma is essentially cured.

Past Medical History: 1) Stage III seminoam eradicated with
chemotherapy; 2) Migraine headaches; 3) Status post cholecystectomy
with ERCP; 4) Orchiectomy; 5) Appendectomy.

Medications: Amerge for migraines.

Allergies: Zofran.

Health Habits: Denies cigarette or alcohol abuse.

Family History: Heart disease, hypertension, non-colon cancer in a
father. Heart disease and non-colon cancer in grandparents.

Review of Systems: GENERAL - Recent weight gain, night sweats. EYES -
No visual disturbances. ENT - Ringing in the ears, bleeding gums,
frequent sore throats. CARDIOVASC - No exertional chest pain. RESP -
No exertional dyspnea, wheezing, hemoptysis, productive or persistent
cough. GU - No hematuria or dysuria. MUSCULAR - No muscle
weakness. SKELETAL - No persistent joint pain. SKIN - No persistent
rash. NEURO - Migraine headaches. PSYCH - No history of significant
mental disturbance. ENDOCR - No history of hormonal disorder. HEME -
Treated for testicular cancer.

Physical Examination: He is a pleasant, well-developed male in no
apparent distress. Height: _'_''. Weight: 194 lbs. BP: 124/74. Heart
rate: 76. Temperature: 97.8. Respirations: 16. Skin - no rashes,
petechiae, purpura, or palpable masses. Eyes without scleral
icterus. Conjunctivae are pink. Lids normal. PERLA. Posterior pharynx
is normal without erythema. Neck is supple without masses, or
thyromegaly. Lungs are clear to auscultation and percussion. Cardiac
exam is regular rate and rhythm without murmurs, gallops or
rubs. Abdomen exam is normal, active bowel sounds, soft, nontender,
nondistended. No hepatosplenomegaly. No masses. Extremities - no
clubbing, cynanosis, or edema. Lymphatic - no palpable cervical, or
inguinal lymphadenopathy. Psychiatic - alert and oriented x 3. Memory
grossly intact.

Diagnostic Data: As per the HPI.

1. Hyperechoic lesion in the tail of the pancreas which has not
   changed in size in the last 3 years. I suspect this is either going
   to be a non-functioning neuro endocrine tumor. Alternately, it
   could have been a metastases from the seminoma but this would
   certainly be somewhat unlikely. I think we should evaluate further
   with an endoscope. This probably needs to be biopsied as well under
   endoscopic ultrasound guidance. I did tell him that while we do
   diagnostic endoscopic ultrasounds in our center, in order to get a
   fine needle aspiration though at the same time, this would have to
   be done in Allegheny General Hospital or UPMC. His insurance covers
   Allegheny General Hospital; therefore will refer him to Dr. Dhawan
   for an EUS FNA of the pancreatic mass.

March 19, 2007
I got a copy of the report from my PET-CT scan of March 9, 2007. It shows no sign of FDG avid malignancy. This means that if the 1 cm mass at the tail of the pancreas is metastasis from the testicular cancer, it is almost certainly fibrotic tissue (scar tissue) and not active cancer. This does not, however, rule out the possibility of nonfunctioning neuroendocrine tumor of the pancreas, as such tumors are often not FDG avid. So I still need to have the EUS-FNA.

The text of the PET-CT report is as follows:

INDICATION AND HISTORY: 39-year-old male for restaging testicular

RADIOPHARMACEUTICAL: F-18 FDG 14.2 mCi IV. Blood glucose at the time
of injection was 190 mg/dl.

TECHNIQUE: FDG PET and CT scans were obtained from the skull to the
proximal mid thights. CT scans were obtained without oral or
intravenous contrast for the purposes of attenuation, localization and
image fusion. FDG PET scans were reviewed with and without attenuation
correction and CT fusion.

COMPARISON: PET scan 11/19/2003

FINDINGS: There are no hypermetabolic foci seen in the head and neck,
chest, abdomen and pelvis to suggest FDG avid malignancy. The
previously noted hypermetabolism in the anterior abdominal wall is not
seen on the current study. There is no hypermetabolism seen in the
region of the tail of the pancreas corresponding to the hypervascular
lesion seen on prior CT scan.


April 2, 2007
Since I hadn't received a call from Allegheny General Hospital to schedule the EUS-FNA, I called the doctor's office and the nurse who handles the scheduling said that they had never received my medical records. So I called the gastroenterologist and spoke with the nurse who was supposed to send my records. She faxed the records today, and I got a call back from the scheduling nurse. My EUS-FNA is scheduled for May 14, 2007 (the earliest available date). It's the usual deal: bloodwork 1-2 weeks prior, nothing to eat or drink after midnight, must be driven to/from the procedure as I can't drive for 24 hours afterwards due to the aftereffects of anesthesia, and must arrive at the hospital at least 1.5 hours before to prep for the procedure. The actual procedure itself lasts 30-45 minutes, followed by 45 minutes or so waking up from anesthesia. I'll probably end up with a sore throat.

May 1, 2007
I had a blood test (platelets) in preparation for the upcoming biopsy. The phlebotomist hit the vein for the first vial, but then shifted the needle losing the vein. After fishing around for the vein for a while (pretty painful), she gave up and tried the other arm. No luck there either. Third time was successful, but it was also a pretty painful stick. I got the feeling that maybe she was a little inexperienced at blood draws.

May 14, 2007
I had my endoscopic ultrasound and fine needle aspiration biopsy (EUS-FNA) today. I should get the results in about a week.

Getting to the hospital was pretty easy. We took 279 south to the East Street Exit (8b), turned right on North Avenue and right again on James Street. The garage was packed, so we ended up parking on the roof. Luckily it was a sunny day. We took the elevator to floor 1 (hospital level). The nurse who had called me earlier with directions said that it had a yellow star next to the one, but she was incorrect. We then took a maze of twisty little passages, walked down the hisotry hall and ended up in the main lobby with registration on the right.

Registration was interesting. After the receptionist took my information, she handed me one of those pager/coasters they use in restaurants. We wandered over to the gift shop and browsed for a while before sitting in the chairs. A few minutes latter it buzzed and we were ushered into registration. Since I was preregistered it was mainly a matter of providing my insurance card, giving some medical history (allergies, previous surgeries) and getting two wrist bands (one for identification and one for allergies).

We then took the elevator to floor "01" (the floor below "1") and turned right to the "GI Lab". We were about an hour early, but only had to wait 20 minutes before the admitting nurse could see me. She took a more detailed history and showed me into the GI lab, where I changed into a gown from the waist up. I then got on a gurney and a nurse (Cynthia) installed an IV with a saline drip. They let me continue wearing my glasses until the procedure. I was parked next to a supply cabinet, so I got to watch the nurses come and go as they prepped other patients.

The anesthesia doctor and nurse dropped by with the usual questions. They told me that instead of a general anesthesia they were going to give me a strong sedative which would keep me awake and breathing without intubation. They assured me that afterward I wouldn't remember a thing.

Dr. Dhawan then dropped by to explain the procedure and obtain consent. He said that the scope has a water-filled balloon at the end, which they press against the side of the stomache and use to look at the pancreas with ultrasound. If they can localize the mass, they then use a fine needle through the wall of the stomach to take tissue samples for a biopsy. The usual risks (perforation, bleeding) are minimal.

They then wheeled me over to the scope room, where I was hooked up to a three-lead EKG, pluse oximeter and pressure cuff. They also inserted a bit guide in my mouth to protect my teeth from the scope and to protect the scope from my teeth. They had me roll over onto my left side and that's the last thing I remember until waking up in recovery.

I woke up with a sore throat and a tummy ache (presumably from where they took the biopsy). The nurse gave me a choice of apple juice, cranberry juice or ice water. I took the latter. My wife came by to keep me company while the cobwebs dissolved. She also rubbed my neck where I had developed a stiff neck from lying on my side.

After half an hour a nurse came by to disconnect the pressure cuff, pulseox and EKG and to remove the IV (taking some hair with it). I then changed back into my clothes and we waited for Dr. Dhawan to come by to say how it all went. He said that the preliminary slides showed no sign of cancer (meaning adenocarcinoma of the pancreas) but that further study/staining would determine whether it is islet cell tumor (i.e., neuroendocrine tumor of the pancreas) or completely benign. He said that there was no sign of metastasis; the lymph nodes were all clear. He said that if it was islet cell tumor, the surgery is pretty straightforward given the location at the tail of the pancreas.

After another short wait, the discharge nurse came by with the discharge instructions, warned me not to sign any contracts for the next day, and then chided me when I tried signing the discharge instructions (my wife was supposed to sign).

May 18, 2007
I got a copy of the reports from my endoscopic ultrasound (EUS) and fine needle aspiration biopsy (FNA) today. The nurse said that she had never seen a biopsy report that referred to acinar cells. The doctor had already left for the day, so I won't hear his interpretation until Monday.

The reports seem to be ruling out both fibrotic tissue and non-functioning neuroendocrine tumor of the pancreas. The latter is part of the endocrine system, and acinar cells are part of the exocrine system. The new possibilities now under consideration are normal pancreatic tissue and pancreatic acinar cell carcinoma (PACC). The latter is very rare and difficult to diagnose.

Best guess is that I will need further testing before my gastroenterologist can recommend appropriate management of the mass. Or he may just say that it should be surgically removed.



Nonspecific abnormal findings on radiological and other examination of
gastrointestinal tract. Asymptomatic pt with recent CT that showed
tail mass, similar in size to CT from 2003.


The procedure, indications, preparation and potential complications
were explained to the patient, who indicated his understanding and
signed the corresponding consent forms. The phsyical exam was
performed. The patient was administered CS-ANES
anesthesia. Supplemental oxygen was used. The patient was placed in
the left lateral decubitus position and an endoscope was introduced
through the mouth and advanced under direct visualization until the
third part of the duodenum was reached. Careful visualization of the
upper GI tract was performed. The procedure was not difficult. The
patient tolerated the procedure well. There were no complications.

Findings on the upper endoscopy:

Esophagus:   Normal esophagus
Stomach:     Normal stomach
Duodenum:    Normal duodenum

Additional notes: EUS: Normal pancreas seen throughout
except for a hypoechoic lesion seen in tail of pancreas
measuring 11 mm by 9 mm. No peri-pancreatic abnormalities
noted. Under doppler guidance, 4 passes made with 25 G FNA
needle and specimen submitted for analysis. IMPRESSION:
Pancreatic tail mass; likely non-functioning islet cell tumor.



The aspirate is moderately cellular with monotonous cells.
The cell show abundant granular amphophilic cytoplasm,
round nuclei with occasional nucleoli. Immunostaining panel
was performed and the cells are negative for NSE, synaptophysin,
chromogranin, MAP-2 and positive for alpha1 antitrypsin and 
alpha1 chemotrypsin. This pattern confirms that these cells
are acinar in origin. No atypia or mitosis is seen. Acinar
cells can be seen in benign pancreatic tissue and also in
acinic cell carcinomas. Also, two groups of ductal cells 
with mild-moderate atypia can be identified. Further 
diagnostic studies and/or tissue confirmation is recommended
if clinically indicated. 

May 31, 2007
I got a call from my gastroenterologist to discuss the endoscopic ultrasound and fine needle aspiration biopsy (EUS-FNA). He said that although the tissue was mostly normal pancreatic tissue, there were a few atypical cells that appear to be precancerous. Specifically, there were two groups of ductal cells with mild to moderate atypia. It does not seem to be islet cell tumor. This is not a definitive diagnosis. It could be normal pancreatic tissue, or it could be precancerous acinar cell carcinoma. There were no peripancreatic abnormalities noted (i.e., no signs of metastasis).

My gastroenterologist is recommending surgical resection via a distal pancreatectomy. He feels that it is most likely a precancerous lesion and that further testing (i.e., more biopsies) is unlikely to yield a definitive diagnosis. Since the mass is located at the tail of the pancreas, surgical removal is simpler than if it had been located at the head of the pancreas and there are unlikely to be long-term consequences of the surgery. Given this, and my young age, he feels that surgical removal is the wisest course of action.

I had independently sent copies of my pathology reports to a national expert on pancreatic cancer who also recommended surgical removal. He said that pancreatic masses generally don't realize malignant potential until they are at least 2 cm in size, and that it is best to remove it when it is small before it has a chance to metastasize. Curiously, he still thinks that it is probable that this is a nonfunctioning neuroendocrine tumor of the pancreas since it is often difficult for pathologists to distinguish acinar cells from neuroendocrine cells.

My gastroenterologist's nurse called his colleagues at other local hospitals to help find an experienced surgeon who is in-network for my insurance at an in-network hospital. She found a surgeon who specializes in laparoscopic liver surgery (150+ cases) and also has significant experience with pancreatic surgery. A family friend who is a doctor at the local cancer institute thinks very highly of his surgical skills, referring to him as a "magician and super star with his hands". I am scheduled to meet with him on Wednesday, June 13, 2007.

June 13, 2007
I met with a surgeon at UPMC Passavant hospital this morning. He says that I can definitely have a laparoscopic distal pancreatectomy and that they may even be able to do a laparoscopic enucleation. The latter is like a lumpectomy. With a distal pancreatectomy there's a chance they might need to remove the spleen; that's avoided with an enucleation. He will meet with the surgeon who would be actually doing the procedure later today to review the MRI scans to get a better sense of whether an enucleation is possible.

The hospital stay after the procedure would be 2 days, and one week recovery at home (no driving, minimal exertion, but I could use a laptop to work). I might return home with drains that would need to be removed later. This is much better than an open procedure, which would require 2 weeks in the hospital and 2 months recovery at home.

They've done a series of 80 laparoscopic distal pancreatectomies. This is probably the longest such series in the US. (Other groups may have done more distal pancreatectomies, but not laparoscopically.) They had 1 mortality (1.25%), an elderly woman who died of a heart attack two weeks after the surgery. The main complication is fistulas (fluid leaks) which usually resolve on their own. In some cases they've had to perform an ERCP to install a stent to release the pressure to enable the fistula to close on its own.

I will be meeting with a surgeon at West Penn Hospital next Thursday. This surgeon is in the same practice as the surgeon who performed my laparoscopic cholecystectomy. He's ordered a dedicated pancreatic CT scan, which will give a good look at the pancreas and surrounding blood vessels and organs. This will be useful for either surgeon, regardless of who I choose.

June 21, 2007
I went to West Penn Hospital this morning. First I had a "dedicated CT scan of the pancreas". Then I met with the surgeon.

The dedicated scan of the pancreas was similar to other CT scans I've had, except it was just of the upper abdomen. I had to drink only one bottle of oral contrast, instead of two. They also injected the IV contrast much quicker, causing my hands, throat and tush to feel like they were burning up.

The results were a mixed bag. The surgeon consulted with the radiologist about the scan, and said that it showed two lesions on the pancreas, not just the one at the tail of the pancreas. The second lesion was about 1.5 cm and on the body of the pancreas. They compared it with one of my 2004 CT scans and found the second lesion there as well. So even after they realized they had missed the first lesion on my original CT scans, they still missed the second one. Amazing! The CT scans are being reviewed by the head of radiology.

So if I need surgery, this means a much more complicated procedure which will involve removing much more of the pancreas. The long term consequences of such surgery are also more severe.

However, the surgeon said that he thinks it would be more appropriate to monitor the lesions than to surgically resect them. He doesn't think that it is acinar cell carcinoma. If it was, I should have been dead two years ago. He also said that he doesn't think it is neuroendocrine tumor. He also says that it looks like the lesions may have shrunk by a few millimeters of the past four years. But he can't say what the lesions are. They aren't due to inflammation from the pancreatitis I had the second week of chemotherapy, because they were present before I had the pancreatitis. But he raised the possibility that the atypical cells were caused by the pancreatitis, even if the lesions themselves weren't. He's ordered a bunch of blood tests to rule out acinar cell carcinoma.

So now I have one surgeon and my gastroenterologist saying that I need surgery, and another surgeon saying that I don't. They will consult with each other to try to resolve the differences. I will probably need additional tests, such as a biopsy of the second pancreatic mass, and will probably ask for a second opinion on the pathology from a major center for pancreatic surgery, such as Johns Hopkins or Sloan Kettering.

Issues I want resolved include:

  • The dedicated scan of the pancreas should compared with the original staging CT scan from 2003, as opposed to a scan from 2004, to verify that the second lesion was present before the chemotherapy-induced pancreatitis. Otherwise it is possible that the two lesions have different origins.
  • The second lesion should probably be biopsied as well, to determine whether it is benign or cancerous. We should not assume that it is of the same type as the mass at the tail of the pancreas.
  • The pathology/cytology from both lesions should be sent out for a second opinion to Johns Hopkins or Sloan Kettering.
  • I should probably have additional blood tests, such as pancreatic polypeptide.
  • There needs to be a definitive diagnosis that says whether or not it is cancerous, precancerous or benign, and if it is cancerous, what type of cancer. This may require testing for additional tumor markers.

I will wait until I receive a copy of the CT scan report to instigate getting these issues resolved. I want all of my doctors to consult with each other until they reach agreement as to the appropriate management of my case. I'm concerned that the doctors aren't going to be able to provide a definitive diagnosis.

June 27, 2007
I received a copy of my CT scan and blood test results today.

The blood tests showed amylase of 33 (normal 30-110 U/L) and lipase of 30 (normal 6-75 U/L). If I had acinar cell carcinoma one would expect both of these to be elevated. ALT (SGPT) was 50 (normal 21-72 U/L) and AST (SGOT) was 28 (normal 17-59 U/L). Sodium and chloride were a little low, but not significantly so. Blood glucose was elevated.

The text of the CT scan report is as follows:


TECHNIQUE: Unenhanced CT of the abdomen was performed followed by
imaging in the pancreatic parenchymal and portal venous phases during
rapid injection of 125 cc Optiray-320 intravenous contrast.

HISTORY: Pancreatic mass, followup

COMPARISON: 12/21/2006 and multiple prior CT exams back to 2003.

FINDINGS: There is marked diffuse fatty infiltration of the liver.

There are 2, slightly hyperdense and mildly hypervascular lesions in
the pancreas, one in the pancreatic body measures 1.5 cm and is seen
best on more delayed images (7-107). Compared to multiple prior
studies the lesion is not significantly changed. The 1 cm lesion in
the pancreatic tail is also stable. The remainder the pancreas normal.
The adrenal glands, spleen both kidneys and bowel are normal in
appearance. There is no retroperitoneal lymphadenopathy. There is no

1. Two hypervascular lesions in the pancreas which are stable over
multiple exams likely represent nonfunctioning islet cell tumors
2. Diffuse fatty infiltration of the liver

July 2, 2007
I met with the pancreatic surgeon who specializes in laparoscopic surgery today. He's done more than 100 laparoscopic distal pancreatectomies.

He said that there are two main options for dealing with the two pancreatic masses:

  1. Surveillance, involving follow-up dedicated scans of the pancreas at 3 and 6 month intervals, and then annually thereafter. This will be in addition to the CT scans I get for follow-up of the testicular cancer.

  2. Surgery, involving a laparoscopic distal pancreatectomy to remove both masses. It would leave the head and part of the body of the pancreas, but would likely result in my having insulin-dependent diabetes. There's a 50% chance they'd need to remove the spleen as well. The second mass is close to the splenic artery, so they won't know if they can preserve the spleen until the surgery. (They would give me vaccinations just in case they needed to remove the spleen.) He doesn't think I would end up needing pancreatic enzymes; only about 5% of patients require them.

An enucleation is probably not possible due to the location of the masses. The surgeon recommends against it because of the greater likelihood of fistulas (leakage).

It is a difficult decision. If I go with surveillance and it turns out to be cancer, there's a chance it will metastasize between scans. Surgery is only curative before metastasis. Nothing is curative after metastasis. On the other hand, if I go with surgery and it turns out to be benign, I will have had surgery with the negative consequences mentioned above.

There is insufficient information to provide a definitive diagnosis, and there likely won't be even with further tests. The surgeon did suggest that there's a possibility that the biopsy missed the mass at the tail of the pancreas and instead hit normal tissue. Plus, the original EUS-FNA did not biopsy the mass in the body of the pancreas. A second biopsy might yield a more definitive diagnosis. It's kind of weird to be wishing for a cancer diagnosis, but I'm more uncomfortable with the lack of a definitive diagnosis than the possibility of a cancer diagnosis.

Next steps are as follows:

  • The surgeon will obtain the pathology slides from my biopsy at Allegheny General for a second opinion at his facility.

  • He will present my case at a pancreatic conference next week, which will get him feedback from a dozen pancreatic surgeons.

  • He is recommend that I have a second EUS-FNA to biopsy both masses. Since Presbyterian Hospital is out-of-network, the only option is to have it at Allegheny General Hospital again.

July 3, 2007
My gastroenterologist's office called today. They are going to order a second EUS-FNA at Allegheny General Hospital. I will be called after the holiday to schedule it.

July 19, 2007
The surgeon who performed my first EUS-FNA biopsy called me today to discuss my case. He said that he had examined the entire pancreas from head to tail during the first ultrasound and did not see the body lesion, just the tail lesion. But it is there on the CT scan.

He also says that the tail mass is unusual. If it were just normal pancreatic tissue, as the biopsy suggested (aside from two groups of atypical ductal cells), it should not be showing up on the ultrasound as a mass and the CT scan as hyperdense and hypervascular. Acinar cell carcinoma was subsequently ruled out by normal amylase and lipase (plus acinar cell carcinoma is aggressive and would not go dormant for four years).

In light of the unexamined body mass and the inconclusive results from the first biopsy, he concurs with my gastroenterologist and the other two surgeons. He is recommending a second EUS-FNA to examine and biopsy both masses. He will do multiple passes on the two masses to make sure that there enough cells are gathered to allow for a second opinion from Johns Hopkins or Sloan Kettering, if necessary.

I have agreed, and his scheduling nurse will call me to schedule a date for the procedure. It will likely be sometime in August. Like the previous one, this will be an outpatient procedure under general anesthesia.

My intuition is that the first biopsy missed the tail mass and hit normal pancreatic tissue. I believe that the most likely diagnosis is nonfunctioning neuroendocrine tumor of the pancreas. (It would be most consistent with certain nonspecific symptoms, such as frequent headaches and the need for frequent bathroom breaks.)

July 24, 2007
I had my semi-annual ultrasound today. The amount and distribution of microlithiasis appears unchanged and the testicle otherwise has a uniform gray appearance (no focal densities). The epididymus measures 1.03 cm by 1.29 cm by 1.1 cm and the epididymal cyst measures 3.3 mm by 2.0 mm by 4.2 mm, a little larger than before. The testicle itself measures 3.48 cm by 2.25 cm by 3.38 cm, a little smaller than before, but maybe due to the measurements being at a different angle.

July 26, 2007
I had a really bad time with the CT scan today.

First, even though I did my usual trick of drinking the oral contrast quickly without tasting it, I just couldn't finish the second bottle. It made me nauseous, and I felt sick to my stomach for the rest of the day.

The nurse who was supposed to put in my IV for the IV contrast was quite inexperienced and had trouble getting the IV started. It was really painful, so I insisted he get a different nurse to do it. The replacement wasn't much better, but at least she got it in on the second try. But she didn't get a blood return when she flushed the IV, which is not a good sign. Later, when the tech hooked up the IV to the IV contrast infuser, it was painful the entire time the contrast was being injected. (The tech also spilled the optiray solution on my arm. This doesn't hurt, but the liquid feels a bit different and dries to a shiny sheen.)

During the CT scan itself, I got a bad muscle cramp in my right arm from holding it over my head. My pinky and ring finger remained numb/tingly for most of the day.

After the CT scan I went to my oncologist's office to have blood drawn for tumor markers and a CBC. The phlebotomist also had trouble drawing blood intially, because she tried using the same vein the inexperienced CT nurse had messed up. Her next attempt worked, but after each vial of blood she had to fish around a little to get it started again. My arm shook the entire time she was drawing blood.

I then went to UPMC Montefiore to pick up the CD-ROMs from the dedicated scan of my pancreas. I must have looked like a human pincushion because the garage attendant waved me through instead of charging me for parking.

July 31, 2007
I met with my oncologist today to review the semi-annual CT scan and tumor marker tests and to discuss the pancreatic lesions. The CT scan shows no sign of metastasis from the testicular cancer and the two pancreatic lesions are unchanged in size. The Beta HCG and AFP tumor markers are both normal at <2 mIU/mL (0-9 normal) and 2 ng/mL (0-6 normal). My blood glucose is mildly elevated at 118 mg/dL, indicating that diet and exercise are adequately controlling it. Sodium was low normal (136 mmol/L vs range of 135-148) and chloride was slightly low (95 mmol/L vs range of 96-109). ALT and AST were up slightly from last time, but still normal, at 53 IU/L (normal 0-55) and 33 IU/L (normal 0-40).

My oncologist believes that the pancreatic lesions will turn out to be adenoma, a benign growth of glandular tissue. Unless the second biopsy on August 8 shows something different, he doesn't feel that surgery is indicated, as surgery would render me insulin dependent. He'd recommend adding surveillance of the pancreatic lesions to my testicular cancer surveillance. The two would mesh well, only requiring an occasional dedicated scan of the pancreas.

The text of the CT scan report is as follows:


A routine CT of the chest, abdomen and pelvis was performed, scanning
from above the lung apices through the pubic symphysis after the
administration of oral contrast and intravenous Optiray.

INDICATION: Testicular cancer.

COMPARISON: CT 12/21/2006, CT of the abdomen 6/21/2007, PET-CT

FINDINGS CHEST: There is no pleural or pericardial effusion. The lung
parencyma is clear. Subsegmental atelectasis at the left base. There
is no thoracic lymphadenopathy. The bony thorax is normal.

FINDINGS ABDOMEN: There is stable diffuse fatty infiltration of the
liver. Status post cholecystectomy. The stomach, spleen, adrenals,
kidneys are normal. The 2 hyperenhancing lesions in the tail of the
pancreas are unchanged in size. No ascites, free air, or

FINDINGS PELVIS: The small bowel is normal. The appendix is not
identified. The colon is normal. The ureters and bladder are
normal. Change status post right inguinal orchiectomy are present. The
visualized adbominopelvic vessels are normal. No free air, fluid or
lymphadenopathy. The bony abdomen and pelvis are normal. Left iliac
bone island is noted.

1. No evidence of metastatic disease.

1. No evidence of metastatic disease.
2. Stable hyperenhancing pancreatic lesions.
3. Stable diffuse hepatic steatosis.

1. No evidence of metastatic disease.

August 8, 2007
I had a second endoscopic ultrasound and biopsy (EUS-FNA) today. The original EUS-FNA (on May 14) did not yield a definitive diagnosis, finding mostly acinar cells with two groups of mild to moderate atypical ductal cells. (Subsequent blood tests ruled out acinar cell carcinoma, as my amylase and lipase were normal.) The original EUS-FNA also missed the 1.5 cm lesion in the body of the pancreas.

The purpose of the new biopsy was to:

  1. Look at the body lesion with the ultrasound, to confirm the presence of a mass.
  2. Biopsy both lesions.
  3. Obtain enough cells to permit a second opinion at a major cancer center if this biopsy also does not yield a definitive diagnosis.

Since I would be receiving general anesthesia, my wife had to drive. Allegheny General is pretty easy to get to from i275. (Allegheny General is one of only two hospitals in the region that can perform this kind of biopsy, and the only one that is in-network with my health insurance.)

As we were getting ready to leave for the hospital we got a call from the GI lab, asking if we could come in early as they had had a cancellation. We left immediately, as this would let them start an hour earlier.

When we arrived at the hospital I took a quick break at the bathroom. The bathrooms outside the GI lab smell like cinnamon.

The prep was the same as last time, undressing just from the waist up. The nurse had to insert the IV in the back of my hand, as she had trouble finding a good vein elsewhere and didn't want to use a vein near my elbow. I do not like them to use the veins on the back of my hand, as my nerves run on top of those veins, so half the time they end up going through the nerve to reach the vein (hurts incredibly for hours). But this time she missed the nerve.

After the doctor explained the plan and I signed the consent forms, they wheeled me into the procedure room and hooked up an EKG monitor and blood pressure monitor. The nurse had a bit of trouble hanging the IV bag; she kept on getting it tangled in some wires and put it on the wrong hook. Then she hooked up a nasal cannula to supply oxygen through my nose. Then we had to wait for 15 minutes because the anesthesiologist was delayed in radiology for an emergency. After he arrived and I signed the consent form, they had me turn on my left side and inserted a bite guard in my mouth. They also put a form-fitting backrest behind my back and had me scoot back against it. The last I remember is seeing 9:38 am on the monitors and a nurse removing my glasses.

I woke up around 1:40 pm with a sore throat, tummy ache and a bit of a headache. The nurse had already removed the IV from my arm.

The doctor said that he was unable to biopsy the body mass, as it was situated between two blood vessels. There would have been too great a risk of uncontrolled bleeding. But he was able to see it on the ultrasound, and it is definitely a mass. So he did two kinds of biopsies of the tail mass. One was the same fine needle aspiration as before, which obtains individual cells. The other used a larger needle to get an actual tissue sample (EUS-TCB), so the pathologist will be able to evaluate the structure of the mass.

Because of the larger needle for the second biopsy, there was a greater risk of bleeding, so the doctor told me to drink only clear liquids today and ordered a CBC blood test for the next morning.

I think the headache may have been caused by the supplemental oxygen getting dislodged or because the procedure may have been a little longer. (I worked for four hours after returning home, took a bath and went to bed early because of the headache.) The headache mostly cleared up by the next morning, and the sore throat by the weekend.

It will take 1-2 weeks for the pathology/cytology reports to come back. The doctor will fax them to me, along with my other doctors. His preliminary report, based on what he saw on ultrasound, is recommending surgical intervention (a distal pancreatectomy). He says that there is a definite mass showing up in both locations on the ultrasound, and he doesn't think it is a benign adenoma. He says that he thinks the surgery would leave enough of the pancreas that I would not become an insulin dependent diabetic.

The next morning we discovered that the doctor had written the wrong name on the prescription. The registrar kept on calling for "Rod". After a while she figured it out and called my name. She corrected the name on the prescription. The phlebotomist tried two times to hit a vein and had trouble both times, so she called a more experienced phlebotomist, who inserted the needle into the vein at the second site without problems.

August 28, 2007
I saw my urologist today. He says that the ultrasound shows no change. My urinalysis shows glucosuria, so the diabetes is starting to cause sugar to leak into urine. It may be necessary for me to take some oral medication to bring it under control, but he wants to revisit it on my next appointment first.

The text of the ultrasound report is as follows:


Testicular microlithiasis; right orchiectomy for seminoma.

Multiple prior scrotal ultrasouns, the most recent dated 01/29/2007.

Sonography of the scrotum was performed.

There are stable postoperative changes from right orchiectomy; this is
no abnormal tissue within the right testis fossa.

The left testis measures 3.5 x 2.3 x 3.4 cm. No parenchymal mass is
identified; there are unchanged multiple microcalcifications. The left
epididymis is unchanged; there is an anechoic epididymal head cyst
which measures 0.3 x 0.2 x 0.4 cm (previously it measured 0.2 x 0.2 x
0.2 cm). A small left hydrocele and varicocele are again noted.


August 29, 2007
I received a copy of the EGD Report and pathology report from my second biopsy today.

The right side of the EGD Report was truncated by the sender's fax machine, but it was mostly readable. The surgeon is recommending surgical intervention (distal pancreatectomy).

The pathology report was again inconclusive, but the pathologist is leaning toward a diagnosis of Islet cell tumor (neuroendocrine tumor of the pancreas). The text of the pathology report is as follows:


Specimen(s) Received

Addendum Diagnosis

Addendum Comment
Immunostains were performed on the cell block for synaptophysin,
chromogranin and NSE. These stains are negative, however, the amount
of cells present in the cell block is very limited. Based on
morphology, it is favored that the small groups represent endocrine
cells, raising the possibility of an Islet cell tumor. However, a
definitive diagnosis cannot be rendered due to limited material and
cell distortion. 


So at this point the options are:

  • Get another biopsy. It isn't clear whether another biopsy would be any more definitive. If I do get another biopsy, I think I'll fly to Johns Hopkins or Sloan Kettering to have it done. (Allegheny General Hospital is one of only two hospitals in the Pittsburgh area that can perform EUS-FNA, and the other hospital is out of network.)
  • Pursue surveillance. There is no established surveillance protocol, though I suppose the doctors could order an annual dedicate scan of the pancreas looking for signs of growth.
  • Go ahead with a distal pancreatectomy. I've sent email to the surgeon asking him whether it would be possible to resect just the tail mass (preserving the spleen) and have it sent to pathology for a quick read during the surgery. If the pathologist reports that it is benign, they'd patch me up and send me off to recovery. But if the pathologist reports a neuroendocrine tumor or other form of cancer, they could remove the body mass as well. That way, rather than turn the tail mass into a pincushion, they'd have enough tissue to obtain a definitive diagnosis.

October 26, 2007
I received the cytology report from the second opinion on my second biopsy. The text of the report is as follows:

FNA tail of pancreas -- seventeen outside slides labeled N07-1823:


November 19, 2007
I met with my gastroenterologist today. He was quite emphatic in saying that I should go forward with the surgery. He said that while there is not a definitive diagnosis, there is enough there that is suspicious for cancer that I should have it removed. He said that another biopsy would not provide any additional information. He added that if I insist on waiting to obtain a definitive diagnosis, by then it will have metastasized and there'll be nothing I can do about it. He does not recommend removing just the tail mass, as there is no possibility for a rush pathology during the surgery.

My next step is to meet with my oncologist to see what he says, since he's been opposed to surgery.

I feel like I'm being forced to make a decision between two difficult outcomes without sufficient information to make a rational choice. On the one hand, if it is islet cell tumor (neuroendocrine tumor of the pancreas), the only effective cure is surgical resection before it metastasizes. My understanding is that such tumors only start to achieve malignant potential when they reach about 2 cm in size. On the other hand, surgery would likely render me an insulin-dependent diabetic and maybe also needing daily pancreatic enzymes. I would also lose the spleen. I don't want to risk this if the two masses are benign, as that could have serious implications for my quality of life.

Clearly, if this is cancer it's been indolent since 2003, since both masses were present in my original staging CT scan from the testicular cancer and are unchanged in size. So one might argue that if they haven't done anything in four years, they probably aren't cancer. But that doesn't necessarily mean anything, since islet cell tumor is a very slow-growing form of cancer that frequently goes indolent and very little is known about the natural history of this type of cancer. (See Population-Based Study of Islet Cell Carcinoma.)

I'm a quantitative guy, and all I've got is vague qualitative information and some opinions that are not really supported by evidence or experience. When I don't have enough information to make a decision, my natural inclination is to try to obtain more information. But I'm getting the sense that further biopsies will not be any more definitive than the first two. Plus, it is difficult to prove a negative, so if this is benign a biopsy wouldn't necessarily help.

So what do we know?

  • Two masses on the pancreas, a 1 cm mass near the tail of the pancreas and a 1.5 cm mass in the body of the pancreas.
  • Both masses were present in my original staging CT scan from May 30, 2003 and are apparently unchanged in size. They both predate the pancreatitis I developed during chemotherapy for testicular cancer.
  • Both masses are hypervascular and hyperdense and show up on CT scan, abdominal MRI and endoscopic ultrasound as definite masses. The tail mass is slightly bilobed in appearance on the MRI.
  • Serum Chromogranin A is normal. 5-HIAA is normal.
  • Both biopsies stained negative for NSE, synaptophysin, chromogranin, but involved a very limited number of cells.
  • The first biopsy had two groups of ductal cells with mild-moderate atypia.
  • The second biopsy, which involved a truecut biopsy that resulted in small groups of cells, had morphology that favored endocrine cells.

The odds of having simultaneous testicular cancer and neuroendocrine tumor of the pancreas are astronomical. I found no prior cases in the medical literature. When I asked one of my doctors what percentage of cases similar to mine turned out to be benign after surgery, his answer was that there were no similar cases.

At this point my gut instinct (pun intended) is that the masses might be benign, but neither possibility can be ruled out, and I probably can't risk the possibility of it being cancer. But I'm also very concerned about needing insulin and pancreatic enzymes.

I've read that pancreatic enzymes can have side effects of abdominal cramps, bloating, gas, belching, indigestion, diarrhea and weight loss. They can also lead to the development of food allergies.

My current thinking is that maybe I should obtain a biopsy elsewhere (e.g., at Johns Hopkins or Sloan Kettering). I've asked my doctors about surveillance protocols, and they've suggested quarterly dedicated scans of the pancreas, but I haven't seen any data on the effectiveness of such a protocol. I'm also thinking of paying a medical research firm to provide a comprehensive review.

November 20, 2007
The surgeon at West Penn Hospital who originally recommended against surgery is again recommending against surgery. He says that with no size change in four years, no symptoms, staining negative for NSE, synaptophysin, chromogranin, and nothing in the biopsy (the atypical ductal cells in the first biopsy are probably due to the pancreatitis), he believes the two masses to be benign (not malignant).

He also mentioned that the UPMC surgeon who is recommending surgery is young and has a 22% fistula rate with the laparoscopic procedures, which is considered high, and an average 18-day hospital stay. He said that the easiest thing for any surgeon to do is to operate, but he would not recommend pursuing this any further.

He will consult with Dr. Jeffrey Norton at Stanford to confirm this approach. Dr. Norton is the national expert on Islet cell tumors.

My feeling at this point is that unless Dr. Norton recommends surgery, I will pursue surveillance.

As far as surveillance is concerned, he would suggest a pancreatic protocol CT scan (dedicated scan of the pancreas) every six months, along with markers. He will talk to my oncologist about integrating this into my surveillance protocol for testicular cancer (CT scan chest/abdomen/pelvis every six months).

November 20, 2007
The letter from my gastroenterologist to my oncologist is a bit milder than his emphatic statements in person. The last paragraph of the letter is excerpted below.

I did explain to Mark that I wasn't sure that I could offer much to
add any insight into the nature of his cyst. It's been there for four
years. It does apear that there is suspicion for malignancy or at
least for a precancerous change and, based on that in a young male, I
thought it was enough to consider getting surgical resection. Of
course, there is a risk that this could be completely benign and that
he may suffer a complication from his surgery but the other risk would
be that we can continue to monitor this and it becomes frankly
malignant and then untreatable at that time. I told him unfortunately
I was not sure that there was anything else that would help elucidate
this and that he would have to make his informed decision based on the
information at hand. My feeling is that he probably should undergo the
surgery despite the attendant risk because I think that the risk of
waiting until a potentially precancerous lesion becomes malignant
would have a devastating impact and may ultimately lead to an
incurable state. I did tell him, however, that there is also a flip
side that there is a small chance that it would be completely benign
and unfortunately having this resection would leave him possibly
needing chronic pancreatic enzyme replacement; perhaps even insulin. I
told him he probably should discuss this further with his surgeons and
his oncologist and make his informed decision. I didn't think that
there was much else I could offer to help clarify the nature of these
cysts except to add that clearly both fine needle aspirations seem

December 17, 2007
Early this morning I woke up choking on my own vomit and had difficulty breathing for a minute. I don't think this was connected to anything, just some acid reflux that got aspirated. I tilted the bed a little and went back to sleep on my left side after eating a few Tums. My throat hurt for the rest of the day.

If it happens again, I'll mention it to my doctor.

December 20, 2007
I had my semi-annual CT scan today.

Traffic was horrible. I tried taking the 31st street bridge, which had reopened recently, but the traffic on Route 28 to the bridge crawled. I got a bit annoyed at the car in front of me. It was a Humane Society minivan, and the driver was not at all paying attention to the road. It looked like he was writing something. He weaved a little bit, and stopped suddenly for no apparent reason.

There was nobody in the waiting room at registration, so I was seen right away. This time I brought a printout of all my previous imaging studies, which also saved some time in completing the paperwork.

Today's nurse was experienced and able to insert the IV on the first try. I drank the first container of oral contrast in the space of a few seconds. I was trying to avoid tasting it. The second container took longer, and I wasn't able to finish the last centimeter as it made me nauseous. The CT was the older machine, not the new 64-slice machine, so it took a little longer. But it was uneventful, with the usual feeling of heat at the back of the throat and base of the tush.

I then drove to my oncologist's office to have blood drawn for tumor markers. The phlebotomist, Mandi, had a different hair color and is five months pregnant. She also inserted the needle into a vein on the first try, but it slipped in further when she changed tubes, probably collapsing the vein. She checked whether she had enough blood for the tests, and used a finger stick for the CBC.

I had loud bowel noises and everything else that accompanies consumption and elimination of oral contrast for the rest of the day.

I also seem to have caught a bad cold at the hospital. The best way to get sick is to visit a hospital, because there are a lot of sick people there.

January 8, 2008
I met with my oncologist today to discuss my recent CT scan and tumor markers and to discuss the two pancreatic masses.

My tumor markers are all normal. Beta HCG is less than 2 mIU/mL (0-9 is normal), AFP is 2 ng/mL (0-6 is normal), and CA 19-9 is 4 U/mL (0-35 is normal). My oncologist added CA 19-9 because of the pancreas.

He also ran a comprehensive metabollic panel and CBC as he usually does. AST (SGOT) and ALT (SGPT) were both slightly elevated, with AST at 43 IU/L (0-40 is normal) and ALT at 59 IU/L (0-55 is normal). Serum sodium and chloride are just slightly below the low end of normal. Blood glucose is 199 mg/dL, twice normal, a sign that my diabetes is out of control. I will need to lose some weight and exercise more. Everything else was normal.

The CT scan report was also fine. The text of the report is as follows:


A routine CT of the chest, abdomen and pelvis was performed, scanning
from above the lung apices through the pubic symphysis after the
administration of oral contrast and intravenous Optiray.

INDICATION: Testicular cancer

COMPARISON: CT of the chest abdomen and pelvis dated 7/26/2007.

FINDINGS CHEST: There is no pleural or pericardial effusion. There is
minimal left basilar subsegmental atelectasis. The lung parenchyma is
otherwise clear. There is no thoracic lymphadenopathy. The bony thorax
is normal.

FINDINGS ABDOMEN: The liver demonstrates table diffuse fatty
infiltration and surgical clips are present in the gallbladder fossa
from prior cholecystectomy. The stomach, splee, adrenals and kidneys
are normal. Previously noted hyperdense lesion in the distal
pancreatic tail in unchanged from multiple prior examinations. The
more proximal hyperdense pancreatic lesion is not seen on today's
examination. No ascites, free air or lymphadenopathy.

FINDINGS PELVIS: The small bowel is normal. The appendix is not
identified. The colon is normal. The ureters and bladder are
normal. The visualized abdominopelvic vessels are normal. No free
air, fluid or lymphadenopathy. Again noted is a small bone island in
the left iliac bone, unchanged.

1. No evidence of metastatic disease.

1. No evidence of metastatic disease.
2. Stable appearance of the hepatic steatosis.
3. Stable hyperdense lesion in the distal pancreatic tail.

1. No evidence of metastatic disease.

My oncologist believes the pancreatic masses to be benign and recommends against surgery. I have decided to not have surgery for the following reasons:

  1. Although the presence of two definite masses has been confirmed, there is not a single positive indication for cancer, just a general suspicion for precancerous tissue.

  2. Both masses have been apparently indolent for more than four years.

  3. Surgery involves several serious risks. In particular, I would lose the spleen and 2/3 of the pancreas. This would render me an insulin-dependent diabetic and requiring daily pancreatic enzymes. There is a 20% chance of fistulas (fancy term for "leaks"). There is a 1% to 5% mortality risk associated with the surgery.

Instead, I will undergo surveillance consisting of a dedicated CT scan of the pancreas every six months. This will look for signs of growth. Eventually it will drop to annual scans. It will be integrated into my regular surveillance for my original cancer. My oncologist will also order any tumor markers permitted by my insurance.

January 25, 2008
I had my semi-annual ultrasound today. I glanced at the images and didn't see any problems. I also had blood drawn for PSA and testosterone tests.

Epididymal Head Cyst

February 26, 2008
I met with my urologist today for the semi-annual clinical testicular exam and to review the results from my PSA and testosterone tests. He threw in a prostate exam since I hadn't had one in a while. The prostate was normal. My PSA was 0.2 ng/ML using the Bayer chemiluminescence method (normal 0-4). My ultrasounds were normal.

My urinalysis showed glucosuria, a sign that my diabetes is not under control. He recommended following up with my PCP.

My total testosterone was 157 ng/dL (normal 250-1100), down from 193 in February 2007 and 255 in January 2006. My free testosterone was 3.14% (49.3 pg/mL), up from 2.55% (49.2 pg/mL) in February 2007 and 2.36% (60.1 pg/mL) in January 2006. Normal is 35 to 155 pg/mL and 1.5% to 2.2%. The percentages are increasing because the total testosterone is decreasing.

So I am again clearly testosterone deficient, although I'm generally asymptomatic. I have been experiencing a bit greater difficulty concentrating and slight short-term memory loss, but those are not severe and not specific to testosterone deficiency. I have not been experiencing any of the more specific symptoms of testosterone deficiency, such as night sweats, hot flashes or irritability. There has been some diminished libido.

My urologist has ordered a bone density test to establish a baseline, since low testosterone puts me at risk of osteoporosis. He has also ordered tests for LH, FSH, prolactin and SHBG. If any of those are abnormal, he'll prescribe testosterone replacement therapy (TRT). Otherwise he's leaving the decision to use TRT up to me.

February 28, 2008
I had my bone density scan (DEXA) today at UPMC Passavant Cranberry. It was quick and straightforward. I had to remove all metal from my pockets (watch, cell phone, digital camera, pen, wallet, keys, pocket knife, change) and my belt. The platform was similar to that of a CT scan, but in this case the scanner moved instead of the platform. First the technician put my legs up on a platform, effectively putting me into a seated position but lying on my back. This was to scan my spine. Then she removed the support from my legs and stretched them out, velcroing my feet to a triangle that turned my legs inward, toes pointing to each other. This was a little uncomfortable, but it wasn't for long. This was for scanning my hips.

I also had my blood tests (FSH, LH, prolactin and SHBG). This took a lot longer than the bone scan. First, the receptionist was unable to photocopy my card because the photocopier was out of paper and she had to ask someone where to get some paper. When nobody knew, she found another photocopier to use. Then the person at registration sat doing nothing for a while before calling me over. I think she forgot about the patients in the waiting room, because she was doing nothing. Then at the lab, the phlebotomist took my paperwork and then had me wait for a while. It was taking so long that the person ahead of me got annoyed, asked for his paperwork and left. I think that prodded her to speed up a bit. Other than that, she was a good phlebotomist, hitting the vein correctly on the first try.

March 12, 2008
I received the results of my blood tests and bone scan today.

FSH was 4.0 mIU/mL (1.0 to 18.0 normal), LH was 3.1 mIU/mL (2.0 to 9.0 normal) and Prolactin was 3.0 ng/mL (1.0 to 20.0 normal), all normal. SHBG was below normal at 8 NMOL/L (9 to 45 normal). It is likely that the low SHBG is the cause of normal free testosterone despite deficient levesl of total testosterone. It is likely that the SHBG is low because of my diabetes. If I were to lose weight the SHBG might increase, which would result in lower free testosterone and I might then become symptomatic of testosterone deficiency.

Bone density at the left hip was normal, but bone density in the spinal cord (vertebrae L1 through L4) was in the osteopenic range. This is likely due to testosterone deficiency. I will need to follow up with my PCP regarding the osteopenia. Most likely I will need to take calcium and vitamin D supplements such as Viactiv.

I will also likely need to go on testosterone replacement therapy.

As a precaution I will ask my doctor about checking my estradiol (E2) levels and also checking for hypothyroidism.

The text of the bone scan report was as follows:

EXAM DATE: 02/28/08


CLINICAL HISTORY: Hypogonadism secondary to orchiectomy.

Bone densitrometry evaluation is performed utilizing Hologic QDR 4500
technique. The following results were obtained and represent mean
values for each region.

Bone density, left hip:   0.916 gm/cm2
T score:                 -0.2 Standard deviations
IMPRESSION: WHO diagnostic guidelines; normal bone density.

Bone density, L1 through L4 anterior:   0.906 gm/cm2
T score:                               -1.3 Standard deviations
IMPRESSION: WHO diagnostic guidelines; osteopenia.


Normal - T score > (-)1.0.
Osteopenia - T score - (-)1.0 to (-)2.5.
Osteoporosis - T score < (-)2.5.
Severe osteoporosis - T score < (-)2.5 + fracture.

T-score - comparison of patient's current bone mineral density to mean
for age at which peak bone density is achieved. 

July 21, 2008
I had my semi-annual CT scan and tumor markers today. The CT scan combined the imaging study of chest/abdomen/pelvis with a pancreatic protocol scan of the pancreas. It took a little longer as a result, and they added some shielding of the chest area. It took two CD-ROMs to hold all the images.

The bench in which they store the gowns has a new wooden seat. The old one had a laminate seat. The "one in front and one in back" sign is unchanged.

After I changed into the gowns the receptionist gave me the two bottles of oral contrast to drink. I wasn't able to finish both bottles of oral contrast as I wasn't feeling well, leaving an inch or so in one of the bottles. The contrast solution was the same as in previous CT scans, but tasted worse this time for some unknown reason. I also got the "topped-off to the gills" feeling a lot quicker even though I was using the same "drink quickly to avoid tasting it" technique.

After I finished most of the oral contrast a nurse called me over to a room just off of the waiting room to have my IVs inserted. They have the IVs inserted there, instead of in the CT scan room, to make more efficient use of the CT scan equipment (e.g., pipelining the process). They're using tegaderm now to cover the IVs instead of tape. It's a little easier to remove.

My IV was inserted by a trainee nurse who had trouble on the first attempt and tried unsuccessfully to recapture the vein by fishing around with the needle. After causing me the requisite amount of pain she asked the supervising nurse to take over rather than turn me into a pincushion. The supervising nurse found the vein on her first attempt. So all in all, it wasn't too bad.

In addition to the usual blood tests my oncologist ordered a 5HIAA urinalysis (a pancreatic tumor marker), which requires 24 hour collection. I can't start it today because of the oral and iv contrast from the CT scan, so I'll start it tomorrow and take off an hour plus lunch break on Wednesday to deliver it to my oncologist's office.

I glanced at the slides and didn't see anything obvious. I won't know for certain until I meet with my oncologist to review the radiologist's report.

Since this represents the 5-year mark, I expect that my oncologist will reduce the frequency of my follow-up from semi-annual to annual.

July 22, 2008
I filled the 3000 ml jug with urine today. As per the instructions, I skipped the first urine of the day after waking in the morning and started the collection with the next. I had no trouble filling the jug throughout the day because I was drinking a lot because I felt thirsty. I stopped filling the jug in the evening because it was completely full. I felt a little weird storing urine in the refrigerator.

July 23, 2008
I drove to my oncologist's office to deliver the jug of urine. I carefully propped up the jug with towels and drove carefully because the last thing I wanted was to have to clean up spilled urine from my car.

I noticed that the state police were out stopping cars for speeding. I wasn't stopped, but I imagined explaining to the police officer why I had a large jug of urine in the back of my car.

July 28, 2008
I saw my oncologist today for my semi-annual exam and to review the results of my CT scan and tumor markers. Everything was normal and stable. He considers me cured of the original testicular cancer and believes the pancreatic masses to be benign adenomas. He recommends that I see an endocrinologist for management of my diabetes, testosterone deficiency and osteopenia as he does not feel they can be adequately managed by a non-specialist.

Tumor markers for testicular cancer were normal, with AFP at 2 ng/mL (0-6 is normal) and beta HCG negative (< 5 mIU/mL). Tumor markers for the pancreas were normal, with CA-19-9 at 13 U/mL (0-35 is normal), Chromogranin A at 2 nmol/L (0-5 is normal), and 5-HIAA 24-hour urine at 2.1 mg/24 hr (0-8 normal) and 0.7 mg/L. WBC were normal at 7.2 (7.0 +/- 3.0), RBC at 5.17 (5.4 +/- 0.7), HGB at 14.8 (16.0 +/- 2.0), HCT at 45.3 (47 +/- 5), MCV at 87.5 (87 +/- 7), MCH at 28.6 (30.2 +/- 3.6), MCHC at 32.7 (33.9 +/- 2.4), and platelets at 212 (150-400).

The text of the CT scan report was as follows:

INDICATION:	Testicular cancer, pancreatic mass


Chest: No metastatic disease 

1. Stable 1 cm hypervascular mass in the pancreatic tail
2. No metastatic disease
3. Fatty infiltration of the liver

Pelvis: No metastatic disease

Triphasic imaging of the pancreas was performed with oral and IV
contrast. Enhanced images were also obtained of the chest and
pelvis. Compared to 12/20/2007.

No nodules in the lungs. No pleural effusion. No enlarged
intrathoracic lymph nodes. Mild dependent atelectasis in the lower
lobes bilaterally.

Diffusely fatty infiltration of the liver. No hepatic
mass. Cholecystectomy. Spleen is normal. 1 cm hypervascular mass in
the pancreatic tail is stable. No new or additional lesion is present
the pancreas. Adrenal glands and kidneys appear normal. No enlarged
retroperitoneal or mesenteric lymph nodes.

Small bowel and colon appear normal. No pelvic lymphadenopathy or free

August 8, 2008
I received copies of blood tests ordered by my primary care physician. The tests demonstrate that my diabetes is out of control, with fasting blood glucose at 417 mg/dL (normal 75-100) and Hemoglobin A1C at 14.7% (normal 4.8-6.0). Also, the urinalysis shows glucosuria (glucose > 1000 mg/dL, ketone 15 mg/dL).

Other abnormal test results include NA at 131 (normal 135-145), CL at 93 (normal 95-109), high cholesterol at 247 (normal 10-199), high triglycerides at 439 (normal 10-199). HDL was normal at 39 and LDL normal at 120. SGOT (AST) low at 14 (normal 15-40). Normal kidney function. The albumin/creatinine ratio, however is high at 31.6 (normal 0-20).

August 26, 2008
No signs of any problems (other than glucosuria) at my semi-annual urologist appointment. Since this is the 5-year mark, we will be switching to annual exams from this point onward.

It is curious that the testicle is 1 cm or so longer in the longest dimension. But there is no sign of any focal masses, so this is not of concern. Most likely this was due to a different angle of measurement.

The text of the ultrasound report was as follows:


The patient is a 41-year-old male with history of right orchiectomy
for a seminoma. 

High-resolution gray scale ultrasound imaging of the scrotum was performed.

The left testis measures 4.6cm x 2.4cm x 3.4cm. Multiple punctate
calcifications are seen throughout the testes which are likely
secondary to testicular microlithiasis. No definite dominant mass is
identified. Normal arterial flow is demonstrated within the
testes. The epididymis appears unremarkable. 

Multiple tortuous vascular channels are seen above the testes which
increase flow on Valsalva which may represent presence of a small

A small amount of fluid is seen within the left scrotum.


October 7, 2008
I saw an endocrinologist at Allegheny General Hospital to address my diabetes and testosterone deficiency. My blood glucose levels have been above 400 for several months and have not responded to diet and exercise (lost 35 pounds) nor medication (glucophage). The endocrinologist believes I am suffering from insulin insufficiency (as opposed to insulin intolerance) stemming from the cisplatin induced pancreatitis I had five years ago. Apparently it can take time for the damage to become evident. He also believes that the two masses in the pancreas are probably due to inflammatory changes from the pancreatitis. (Of course, the two masses were present on the staging CT scan, which predates the pancreatitis, so that hypothesis probably isn't correct.)

His plan is to first address the diabetes and then revisit the testosterone deficiency and osteopenia. He says that diabetes can inhibit testosterone production so some of the deficiency may be due to that. (He pointed at the normal FSH and LH as a potential indication for it to not be primary hypogonadism.) Likewise diabetes can contribute to osteopenia. It will also be easier to diagnose when the blood glucose levels have normalized.

He is ordering a total of 33 fasting blood tests and a 24-hour urine collection. The blood tests include gonadal function (total testosterone, free testosterone, bioavailable testosterone, SHBG, estradiol, FSH, LH), pituitary function (IGF-1, prolactin), calcium (calcium, albumin, phosphorus, magnesium, 25-hydroxy vitamin D, intact PTH), diabetes (Hemoglobin A1C, antigad 65 antibody, C-Peptide), hematology (CBC with differential, platelets), general chemistory (comprehensive metabolic panel, serium iron, ferritin, tibic, vitamin B12, folate), lipids (total cholesterol, hdl, ldl, tg, vap, total cpk), thyroid function (t4 total, t3 uptake, tsh high sensitivity, antimicrosomal antibodies, thyroglobulin antibody). The urinalysis includes protein, creatinine clearance and microalbumin.

He is prescribing intensive insulin with two types of insulin, Lantos and Novolog, one for a baseline longer-lasting insulin level and the other before meals. I have an appointment with a nurse to undergo diabetes education again.

October 8, 2008
This morning I had blood drawn for the 33 blood tests. The phlebotomist hit a good vein on the first try, and then proceeded to exsanguinate me, filling 17 vials with blood. I have five days to collect and return a 24-hour urine or they'll have to draw blood again (but only one vial). [On October 17-18, 2008 the lab billed my insurance a total of $5,147,25 and was paid at UCR a total of $4,375.19.]

Between the 14 hour fast and the blood draw I was a little light-headed, so I stopped by a pharmacy to fill the insulin prescription and get some munchies.

October 22, 2008
I had my diabetes education today. The intensive insulin therapy includes Lantos (slow acting insulin) and Novolog (fast acting insulin). I will be taking 20 units of the Lantos once a day to establish baseline insulin levels and the Novolog before meals. The number of units of Novolog will depend on my blood glucose levels and the number of carbohydrates. 10 grams of carbohydrates corresponds to one unit of insulin, and every 50 ng/dL of blood glucose above my target (100 ng/dL) to one unit of insulin. This yields the following formula:
   # units of insulin = 
       grams of carbohydrates / 10 +
       (blood glucose - 100) / 50.  

I will be taking the Lantos at night. If my blood sugar is too low in the morning, I will start taking it in the morning instead.

My blood glucose targets are 100 ng/dL before meals and 140 ng/dL two hours post-prandial.

I have two insulin pens, one for each type of insulin. The insulin needs to be refrigerated until it is installed in the pens. Once installed in the pens, the insulin does not need to be refrigerated and is good for 30 days.

October 23, 2008
My first day of insulin was ok. Four injections a day, plus more frequent monitoring of blood glucose. I had a little more energy, but also more fatigue and somewhat irritable. Some abdominal upset (probably not related to my giving myself the four injections in my abdomen). My blood glucose did come down a bit, to around 300. I probably need to increase the insulin dosage.

October 24, 2008
I received a copy of the test results from my October 8, 2008 blood tests and urinalysis.

Hematocrit was a little low at 40.3% (reference range 42.0 to 52.0), possibly a sign of dehydration from the diabetes. The rest of the CBC was within the normal range. Sodium (NA) was a little low at 132 mEq/L (reference range 135-145).

Fasting blood glucose was high at 394 mg/dL (normal 75-100). Note that this was after a 14-hour fast. Hemoglobin A1C was high at 15.1%. C-Peptide was 1.4 NG/ML (normal 0.8 - 3.1). Somatomedin-C (insulin-like growth factor 1) was low at 74 ng/mL (normal 86-220).

Cholesterol was high at 299 mg/dL (normal 10-199), probably a side effect of the high blood glucose. Triglycerides were 835 (normal 10-199) and HDL was 36 mg/dL. LDL was not calculated because of the high triglyceride levels; instead a direct measurement was ordered, yielding 100 mg/dL (0-129 is normal).

CK (Creatine phosphokinase) was low at 13 U/L (24-210 normal). Bilirubin (0.7 mg/dL), protein (7.6 g/dL), ALB (3.5 g/dL), AST (19 U/L) and ALT (42 U/L) were all normal. BUN/CREAT ratio was 13. Estimated GFR was greater than 60 mL/min/1.73m^2 indicating normal kidney function.

Magnesium (1.9 mg/dL), Iron (86 ug/dL), total iron binding capacity (267 ug/dL), vitamin B12 (395 pg/mL) and ferritin (296 ng/mL) were all normal. Folate was high at > 24 ng/mL. Calcium (8.9 mg/dL) was normal. Vitamin D 25-Hydroxy was normal at 39 ng/mL (normal 20-100) as was Vitamin D 250HD3 at 39. Vitamin D 25OHD2 was <4 ng/mL. Vitamin D levels are therefore sufficient.

T4 (8.6 ug/dL), T3 (109 ng/dL), TSH High Sensitivity (1.1 mU/L) and Intact parathyroid hormone (24.2 pg/mL) were all normal. Thyroid Peroxidase AB (TPO) was < 10.0 IU/ML (normal < 35) and Thyroglobulin Antibody was < 20.0 IU/ML (normal < 20).

The urinalysis showed creatinine of 0.9 mg/dL (normal 0.8-1.3) and urine volume 5900 mL. Total protein was not calculated because the levels were below 6 mg/dL. Creatinine clearance was 72 mL/min (70-130 normal). Urine creatinine was 1.0 gm/24 hours (normal 0.6-2.5). Microalbumin was 12.0 mcg/min (normal 0.0-20.0).

With regard to the testosterone deficiency, LH (5.5 mIU/mL, normal 2.0-9.0), FSH (4.9 mIU/mL, normal 1.0-18.0), Prolactin (4.0 ng/mL, normal 1.0-20.0) and Estradiol (27 PG/ML, normal <= 29) were all normal. SHBG was low at 6 NMOL/L (normal 9-45). Testosterone levels as measured by Quest Diagnostics were as follows: Total Testosterone was low at 226 ng/dL (normal 250-1100), Free Testosterone was normal at 71.2 pg/mL (normal 35-155) and Free Testosterone Percentage was high at 3.15% (normal 1.5% to 2.2%). A second set of tests were performed by a reference laboratory: Total Testosterone was low at 195 ng/dL (normal 250-1100), Free Testosterone was normal at 70.7 pg/mL (normal 46-224), Bioavailable Testosterone was normal at 126.9 ng/dL (normal 110-575) and Albumin was normal at 3.9 g/dL (normal 3.6-5.1) The normal free testosterone with normal FSH and LH but low SHBG suggests that the testosterone deficiency is not symptomatic because of the diabetes. As the diabetes gets under control the testosterone deficiency will likely become symptomatic.

November 25, 2008
I had blood drawn in advance of my follow-up appointment with the endocrinologist on December 2, 2008. He ordered the same set of tests, including 24 hour urine collection and 17 vials of blood. I was initially a little concerned because the nurse had mailed me a photocopy of the 10/7/08 prescription ordering the tests instead of a new prescription, but she said that Dr. Gordon always orders a lot of tests.

I had a bad headache after the exsanguination and took a nap for the rest of the morning. It helps a little.

December 3, 2008
I met with my endocrinologist. He increased my nightly dose of Lantos insulin to 40 units and changed the formula for before-meal Novolog insulin to 1 unit for every 30 mg/dL of blood glucose over the target of 100 mg/dL, plus 1 unit for every 7 grams of carbohydrates. Previously I was at 30 units (up from 20 units) of Lantos a night and 1 unit of Novolog for every 50 mg/dL of blood glucose over the target of 100 mg/dL, plus 1 unit for every 10 grams of carbohydrates. He also gave me a shot of vitamin B12 because I was a bit low and prescribed a highly bioavailable version of B12 for me to take daily.

I also got my latest blood tests back. Key test results and tests that were outside the normal range include:

  • Fasting blood glucose of 187 mg/dL (normal 75-100), down from 394
  • Cholesterol 217 ng/dL (normal 10-199), down from 299
  • Triglycerides 156 mg/dL (normal 10-199), down from 835
  • HDL 63 mg/dL (>= 60 negative risk factor for Chronic Heart Disease), up from 36
  • LDL (calculated) 123 mg/dL (normal 0-129), up from 100
  • Magnesium 1.8 mg/dL (normal 1.8-2.4), down from 1.9
  • Folate > 24.0 ng/mL (normal 5.3-24.0), unchanged
  • Vitamin B12 287 pg/mL (normal 250-1100, > 600 preferred), down from 395
  • Ferritin 101 ng/mL (normal 25-320), down from 296
  • T3 Uptake 30% (normal 33-40)
  • Hemoglobin A1C 11.1% (normal 4.8-6.0%), down from 15.1%
  • Calcium 9.1 mg/dL (normal 8.5-10.1), up from 8.9
  • Prolactin 7.0 ng/mL (normal 1.0-20.0), up from 4.0
  • LH 4.1 mIU/mL (normal 2.0-9.0), down from 5.5
  • FSH 4.3 mIU/mL (normal 1.0-18.0), down from 4.9
  • Free Testosterone 44.5 pg/mL (normal 35.0-155.0), down from 71.2
  • Free Testosterone % 2.39% (normal 1.50-2.20%), down from 3.15%
  • Total Testosterone 186 ng/dL (normal 250-1100), down from 226
  • C-Peptide 2.1 NG/ML (normal 0.8-3.1), up from 1.4
  • Somatomedin-C (insulin-like growth factor 1) 118 ng/mL (normal 86-220), up from 74

Several additional tests are still pending.

My endocrinologist expects the cholesterol to normalize with further improvements in blood glucose control.

We will wait until my next set of tests to determine what to do about the testosterone deficiency. It is possible that getting the diabetes under control may lead to improvements in testosterone production. I am experiencing night sweats, but I can handle it for another 3 months.

February 26, 2009
During the landing on a plane flight yesterday, my left ear did not equalize air pressure correctly. It was a painful descent and I lost hearing in the ear. I also had a nosebleed. My PCP took one look at the ear and said "oh my". The ear drum was completely inflamed. I am on antibiotics, anti-inflammatory drugs, nasal corticosteroids and sudafed, and may need to see an ENT on Monday if there is insufficient improvement over the weekend.

March 12, 2009
I saw my endocrinologist again today for my quarterly appointment. My blood glucose continues to be volatile and I continue to gain weight. My morning (fasting) blood glucose has been averaging 160 mg/dL (lab tests measured it at 139 mg/dL), an indication that the Lantos dose is too low, so the doctor increased the dose to 50 units, up from 40.

Blood test results were as follows: Cholesterol was high at 209 mg/dL (normal 10-199), with triglycerides at 91 mg/dL (normal 10-199), HDL at 41 mg/dL (moderate risk factor for chronic heart disease) and LDL calculated borderline high at 150 mg/dL (normal 0-129). AST was high at 42 U/L (normal 10-40) and ALT was high at 83 U/L (normal 25-75). Folate was high at >24.0 ng/mL (normal 5.3-24.0) an vitamin B12 was high at >2000pg/mL (normal 200-1000). Hemoglobin A1C was slightly high at 6.4% (normal 4.8-6.0), a significant improvement from 11.1%. Hemoglobin A1C is a long-term measure of diabetes control.

Total testosterone was deficient at 223 ng/dL (normal 250-1100), but free testosterone was low normal at 62.5 pg/mL (normal 46.0-224.0) and bioavailable testosterone was low normal at 120.3 ng/dL (normal 110.0-575.0), probably because the SHBG was low normal at 10 NMOL/L (normal 9-45). So I am asymptomatic of testosterone deficiency despite the below normal total testosterone because the bioavailable testosterone is within the normal range. Most likely there is an interaction between the diabetes and the SHBG that is suppressing SHBG and permitting a normal bioavailable testosterone despite the below normal total testosterone. As the diabetes gets under control, SHBG will likely increase, causing bioavailable testosterone to decrease and I will likely become symptomatic of testosterone deficiency.

April 21, 2009
The US Patent and Trademark Office has granted me a patent on my technology for optimizing cancer follow-up surveillance schedules. US Patent Number 7,523,043, Method for Minimizing the Cost of Post Treatment Follow-up and Diagnostic Tests, issued today.

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