What's at Stake?
The main argument in favor of surveillance is that it avoids overtreating the patient. Why undergo chemotherapy or radiation therapy, when there's a good chance that you're already cured? Surveillance avoids all the possible side effects and complications associated with further treatment.
On the other hand, many patients feel uncomfortable with such a passive approach. With surveillance, you never know that you're cured, although the risk of a relapse does decline with time. They'd much rather do something -- anything -- than wait for the possibility of a relapse. Taking proactive steps to kill the cancer offers peace of mind, even if the ultimate outcomes are similar either way.
Thinking about the answers to a few questions may help you choose among the options. These questions fall into two groups. One group concerns the effectiveness and consequences of each possible course of action. The other group relates to the emotional aspects of the decision.
The bottom line is there are no wrong choices. Whatever you feel most comfortable with is the right decision for you, even if you change your mind several times before choosing one option or the other.
Intellectual Considerations of Choosing Surveillance
The decision to choose surveillance as a treatment option depends, in part, upon intellectual considerations. What is the probability of success and failure, and what are the consequences of each possibility? Answering the following questions may help you appreciate the facts and figures affecting your decision.
- What are the chances that you're already cured? Your oncologist will only offer surveillance as an option if he feels you are a good risk patient. A "Stage I" patient typically shows no signs of spread (i.e., negative CT scan report), the tumor markers have returned to normal levels, and the pathology or biopsy report indicated that the primary tumor was less aggressive (e.g., no local invasion, small size original tumor, histological types of cancer cells). But since cancer spreads microscopically, it is possible that the cancer has already spread, but won't show up on a CT or PET scan for several months, especially if it involves a slow-growing tumor. Ask your doctor what percentage of patients like you relapse while on surveillance.
- How easy will it be to detect a relapse? If you had elevated tumor markers that normalized after the initial treatment, there's a good chance that a relapse will be signalled by an increase in tumor markers. This gives your oncologist a good tool for detecting relapses, in addition to radiological exams.
- What are the consequences of relapsing while on surveillance? Ideally, the chances for a cure should be similar for patients who relapse while on surveillance and patients who opt for a more aggressive initial treatment. But relapsing can sometimes limit treatment options. For example, since relapses usually involve metastatic spread, treatment after a relapse will typically be systemic in nature (e.g., chemotherapy). Some types of treatment may preclude pursuing certain other options if the treatment fails (e.g., a prostatectomy after implanting seeds is a much more complicated operation than pursuing a prostatectomy from the start).
- What are the side effects and complications associated with a more aggressive treatment protocol? Some forms of cancer treatment involve long-term or permanent side effects, such as an increased risk of a second cancer or an increased risk of cardiovascular complications like heart attack or stroke. Short term side effects can include hair loss, nausea, pain and fatigue. Why subject yourself to the side effects of further treatment if there's a good chance you're already cured?
Emotional Considerations of Choosing Surveillance
The decision to choose surveillance as a treatment option depends, in part, upon emotional considerations. How comfortable are you with each of the options? Answering the following questions may help you appreciate the emotional aspects of your decision.
- How comfortable are you with the possible side effects of more aggressive treatment? For example, abdominal surgery for prostate cancer or testicular cancer may risk impotence or retrograde ejaculation, in addition to a month or two of recovery. Certain types of chemotherapy may affect lung function and so be less desirable for recreational or professional divers.
- Will you be able to stick to the rigid surveillance schedule? Surveillance involves a schedule of frequent doctor visits and diagnostic tests designed to catch relapses early. If you can't follow the surveillance schedule because of job-related travel, a lack of suitable facilities where you live, or insurance/financial considerations, you may be better off pursuing more aggressive treatment. The highest risk period for a relapse is the first two years after the end of treatment. But even after you reach the five year mark, you will still have an annual surveillance appointment, since late relapses can occur decades later.
- How do you feel about not doing anything proactive to kill the cancer? Some people just don't like the possibility that cancer could still be inside them. If you're prone to worrying, you might not feel at ease on surveillance. Pursuing a more active form of treatment might offer you greater peace of mind.
- Do you like roller coasters? During surveillance, you may have a few scares. When a diagnostic test shows a possible relapse while on surveillance, it may be a false alarm or inconclusive. Typically oncologists require confirmation of a result before proceeding with more active treatment. This can involve waiting a month or two to repeat the test. (An anomaly on a CT scan does not necessarily mean the cancer has come back. Radiologists tend to be extremely conservative, noting what turn out to be insignificant findings. Also, higher resolution CT scans, such as spiral CT, helical CT and HRCT, are more likely to identify anomalies that turn out to be benign.) You may be very nervous while you wait for the test results to come back. Sometimes even the repeat test is inconclusive. For example, if two CT scans show a slightly enlarged lymph node to be stable in size, your doctor may want to continue to wait and see what happens. Even if the repeat test comes back negative, your anxiety may increase. Cancer patients already have a tendency to get worried about every bump, bruise, ache and pain they encounter after their initial diagnosis.
If you take too long to decide, you may end up on surveillance by default.
Copyright © 2005-2018 by Mark Kantrowitz. All rights reserved.
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