Testicular Cancer Checklist

You and your doctors may not anticipate everything that needs to be done before treatment. This checklist is intended to give you the benefit of 20/20 hindsight.

In addition to everything listed below, ask for copies of every medical record -- every radiologist report, every blood test, every scan -- it will be useful later. Let each of your doctors know that you want copies of everything. Ask them to fax you a copy of every result.

If you don't have a fax machine, get one. You'll find that it is easier to get doctors and hospitals to give you copies of reports if you ask them to fax them to you.

As Soon As Cancer is Suspected

  • As soon as you suspect you may have cancer, schedule an appointment with your dentist, and have the dentist not only give you a thorough cleaning, but also address any cavities or other problems. It is best to get this all out of the way before you start treatment. If you don't normally brush your teeth, start doing it now. Buy yourself a Sonicare and use it not only to brush your teeth, but also along the gumline. This will stimulate good gum health, which will become important if you undergo chemotherapy. (You will need to switch to a soft bristle toothbrush after starting chemotherapy.)

  • Ask your doctor about sperm banking. Cancer therapy (radiation therapy, chemotherapy, and an RPLND) can cause temporary or permanent infertility. Even when the infertility is temporary, it still means a period of a few years after treatment when achieving a pregnancy is more difficult. So to preserve options, testicular cancer patients should consider whether or not to bank sperm as soon as they have a confirmed cancer diagnosis.

    You will encounter a catch-22 situation with regard to sperm banking. Since sperm banking is often not covered by insurance, and costs $2,000 to $3,000, you won't want to spend the money until you're sure you have cancer. But as soon as the ultrasound confirms a solid testicular mass (a tumor), your urologist will want to perform an orchiectomy (even the same day, but certainly within a day or two). You won't be able to perform sperm banking for about 10 days after the orchiectomy. By then your oncologist will be itching to begin treatment. Sperm banking requires 5 or 6 sample collection sessions, two days apart, meaning that you'll need two weeks with appointments on Monday, Wednesday and Friday. So you need to be aggressive with your PCP and urologist in getting a referral to the local cryobank and in scheduling the sperm banking, to minimize the delay in your treatment. You absolutely do not want to delay your orchiectomy for the sperm banking, since it is best to get known cancerous tissue out of your body as soon as possible. So there are only two possibilities: getting it done before the ultrasound (and thus before you know for certain that you have cancer) or after the orchiectomy and before the start of chemotherapy or radiation therapy. (If your doctor is talking about a RPLND, you definitely need to get sperm banking done before the RPLND.)

  • Get an attorney to draft a durable healthcare power of attorney and healthcare treatment instructions (living will). If you need a regular will, now is a good time to have it updated. You may also want to execute a regular power of attorney, to enable someone else to manage your finances.

  • Set up as many of your bills as possible for automatic bank debit and make sure you have plenty of cash in your bank account. Ask someone you trust to open your bills and make sure you don't miss payment deadlines.

  • Before you begin treatment (especially before you start chemotherapy or radiation therapy), go to the movie theater and watch all the movies you are interested in. Once you start treatment, you will be avoiding crowds.

  • If there are any chores or repairs you've been procrastinating on, take care of them right away. Take your car in for service. Fix the leaky sink. Take care of anything that's wrong. Once you start treatment, you're going to have less energy.

After a Confirmed Diagnosis

  • As soon as you have a testicular cancer diagnosis, ask your doctor or oncologist to sign the Department of Motor Vehicles form requesting a disabled parking placard. The most appropriate reason code will probably be the one associated with "unable to walk 200 feet without resting" if there isn't one specifically for cancer patients. It takes the DMV a month to send you the placard, and by then you will need it. Even though you will be avoiding crowds, and may even be too tired to drive, there are times when someone else will be driving you places and it will help to be in a spot closest to the door. It will be helpful if you have a copy of the form right there for the doctor to sign. If your oncologist is reluctant to sign the form, tell him that other testicular cancer patients have told you that it helped a lot, especially for picking up drugs from the pharmacy and for grocery shopping. If the oncologist won't sign it, ask your regular doctor to sign it -- any doctor can sign the form.

  • Join the TC-NET mailing list. It is a mailing list for testicular cancer patients and survivors. You will find it very helpful in getting questions answered and help understanding your pathology report and other diagnostic tests.

Before the Orchiectomy

  • Before the orchiectomy, have your urologist measure your testosterone levels. This will establish a baseline that can be helpful in diagnosing problems later. They should draw blood for serum testosterone, FSH, LH, SHBG and Prolactin.

  • Also insist on having them measure your tumor markers before the orchiectomy. They should draw blood for AFP, Beta HCG, and LDH. This establishes a baseline for comparison with your levels after the orchiectomy. Tumor marker levels will be rechecked about a week after the orchiectomy for beta-HCG and about a month after the orchiectomy for AFP.

  • The orchiectomy is usually performed as a same-day surgery (admitted in the morning, discharged in the afternoon). You will need someone to drive you to the hospital and to pick you up afterward. You will not be able to drive, partly because of the surgery (you won't want to stomp on the breaks), partly because of the anesthesia (you shouldn't drive for a few days after receiving anesthesia), and partly because you will be taking pain medication.

After the Orchiectomy

  • Use a bag of frozen peas or corn on the incision area (wrapped in a paper towel if it is too cold). It helps with the pain and swelling, and is easy to "mold" to the shape of the abdomen. Get two, so you can refreeze one while using the other.
  • Whatever you do, do not laugh. Avoid comedy and humor for several days after the surgery. It hurts to laugh for a few days after the surgery.
  • Have them measure your tumor markers about 7-10 days after the orchiectomy (and before any further treatment). Since tumor markers tend to have a halflife of about a day, if the cancer was isolated to the testicle your tumor markers should drop to normal levels about a week after the surgery. (Beta-HCG has a half life of 24-36 hours, so a week should be sufficient to show signs of marker normalization. AFP has a half-life of 5-7 days, so a month should be enough to show signs of marker normalization, although the trend may be apparent after a week. The amount of time until marker normalization will depend, of course, on the initial tumor marker levels.) If the tumor markers do not normalize, it is a sign that there is still active cancer somewhere in your body.
  • After the orchiectomy, further care usually switches from the urologist to an oncologist (cancer doctor). Your urologist should give you a referal to an oncologist. There are two types of oncologists: medical oncologists (chemotherapy) and radiation oncologists (radiation therapy). There will be one follow-up visit with the urologist a few weeks after the surgery, to check on how the incision site is healing, but other than that your continued care will be in the hands of an oncologist. Only if you need further surgery, such as a RPLND, would you see the urologist again.

Before Chemotherapy

  • There are certain diagnostic tests that should be conducted before chemotherapy starts. Some of them, like a CT scan, are necessary both to diagnose the staging and to establish a baseline. Others are to establish a baseline. The CT scan should include the pelvis, abdomen, and chest in order to properly stage the cancer. Ask your doctor to schedule a pulmonary function test and an audiogram (hearing test). These are important because of common side effects of chemotherapy, and having a baseline is important for comparison later. Also insist on having them measure your tumor markers your first day of chemotherapy before they start the chemotherapy (they will have put in an IV, so it will be easy for them to draw the blood before hooking up the fluids). Also talk to your doctor about possibly having a PET scan, if your insurance will cover it. A PET scan would be in addition to the CT scan. If you're going to have PET scans, it is best to have one before the start of chemotherapy or radiation therapy, in addition to one six weeks after the end of treatment.

  • Before you start treatment, pick an extravagant gift that you will give yourself after you complete treatment. It helps when you are experiencing the pain and side effects associated with treatment to think of that gift as a goal.

  • If you like to read, go to the bookstore and buy a bunch of books. If you like to listen to music, make sure you have a good portable radio, CD player or MP3 player. If you like to watch movies, get yourself a portable DVD player and a bunch of DVDs. There will be times when you need something to do, and even TV becomes boring after a while.

  • Buy a mini fridge or cooler for your bedroom. You will want to keep some beverages nearby, especially ginger ale (good for nausea). Buy a set of walkie talkies (FRS radios) or an intercom if someone else will be helping take care of you. Buy a small plastic bin or pail to keep by your bed in case you need to vomit. (When you need to vomit, you might not be able to make it to the bathroom in time, or even get out of bed.)

  • Before treatment begins, go shopping for a nice hat. It should not have any bumps or clasps around the inside rim, because that will be uncomfortable against your skin after your hair falls out. A continuous cloth rim is probably best. Baseball caps that have a snap or buckle in back will not feel good against your skin.

During Treatment

  • Get into the habit of weighing yourself and taking your temperature every day. Keep a weight and temperature log.

  • Drink at least 8 full glasses of water a day. Drinking a gallon of water helps flush the chemotherapy drugs from your system, thereby minimizing the more toxic side effects. It also helps prevent the chemicals from building up in your kidneys and bladder, thereby preventing health problems such as kidney failure. If you are not urinating at least once an hour, you are not drinking enough water. Gatorade and pedialyte are also good, since they will help restore your electrolytes, especially if you suffer from diarrhea or vomiting.

  • If you don't have a port installed, there are several tricks to getting a vein to 'pop' so the nurse can find it. One tip is to have the nurse wrap a hot towel around your arm (microwaving a wet towel for 10 to 30 seconds should do the trick). The heat causes the veins to appear on the surface. Another trick is to pump your fist several times rapidly or to squeeze a stress ball. Wrapping the tourniquet around your should might also work.

  • If you are receiving Bleomycin, avoid scratching and bruises. This can lead to "chemo burn", where the skin becomes discolored. It takes a very long time for the skin discoloration to disappear.

  • Your sense of taste and smell will change during chemotherapy. It is a good idea to avoid foods you like, since chemotherapy patients can develop an aversion to foods eaten during chemotherapy, even favorite foods. Also avoid anything with a strong smell, such as perfume, cologne and household cleaners.

  • Take your antinausea medication even if you feel fine. The anti-nausea medication only works if it is present before the nausea occurs. If you take it after you start feeling nauseous, it won't work.

  • If you develop an allergy to Zofran, ask your oncologist about Kytril. If you develop break-through nausea, ask your oncologist about a relatively new drug called Emend.

  • Vomiting doesn't make you feel better. You still feel awful and like you need to vomit, even though after the third time there's nothing left to come up.

  • If you are receiving Decadron for nausea, ask the nurse to drip it or do the IV-push very slowly. If they give it to you too fast, it can not only make your face hot/flushed and give you an itchy tush, but actually induce vomitting.

  • If you are ever hospitalized during your treatment and you aren't in the oncology ward, you will run into a few problems. First, they probably won't have the antinausea medication on the ward, so they will have to order it from the hospital formulary. Remind them a few hours before your next dose, otherwise you may get nauseous during the delay. Nurses who aren't oncology nurses are less familiar with chemotherapy patients and are more likely to push your Decadron all at once. An oncology nurse will sit with you for twenty minutes while pushing your Decadron; a regular nurse will be in a rush to see the next patient.

  • During treatment you will be sitting around in the chemotherapy infusion room for 6-7 hours a day. Your oncologist may have a television and some magazines, and there may be other patients to talk to, but you may want to bring some reading material or a friend with you.

  • Tell your friends and family to not give you flowers, plants, or fruit baskets. If you become neutropenic during chemotherapy, you will be at risk of infection, and should avoid exposure to these items.

General Tips

  • Always ask your doctors for copies of all lab reports, especially pathology reports, imaging reports (CT scans, MRIs, ultrasounds, PET scans), and blood tests (tumor markers, testosterone levels). You will be getting a lot of information all at once, and will not be able to remember everything. So better to have a copy that you can look at later. Also, you can post the text of the report to the TC-NET list to get help understanding what it means.

  • The initial staging of the cancer will depend on the pathology report and the CT scan. This is usually sufficient to determine treatment options.

  • If you are suffering from mood changes, fatigue, night sweats, difficulty concentrating, or personality changes, talk to your doctor. It is possible that you are suffering from testosterone deficiency. Your doctor should test your testosterone levels (along with FSH, LH and Prolactin levels) at the same time of day as your presurgical test. Some reduction is to be expected, since the orchiectomy removed a source of testosterone production. However, the "normal" ranges are for intact males and span a wide range that is not age-adjusted. A low normal result might be normal for a 70-year-old, but not for a 35-year-old man. If your testosterone levels are within the normal range, but your FSH or LH levels are elevated, that can be a sign of deficiency. But even if your FSH and LH levels are normal, low normal levels can be a sign of deficiency if you are symptomatic. It is generally a good idea to see an endocrinologist for evaluation of your symptoms and endocrine levels.

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