ASK YOUR DOCTOR THREE SIMPLE QUESTIONS
Answering the question "What should I do?" may involve a conversation with your doctor. Before having that conversation, however, take a minute to reach his / her shoes. Take into account the question of testing from your doctor's standpoint.
Doctors can hardly go wrong suggesting a test. If the test is normal, we can offer patients the reassurance that they're well. If the test is abnormal but the patient is subsequently shown not to have cancer, the patient is so relieved that questions about the original decision to test are unlikely to be raised. And if the patient is found to have cancer, there is the silver lining: we caught it early. The question of whether the test or the diagnosis was necessary will never be raised.
But doctors can go wrong if we fail to order a test especially if another doctor recommends it later, in which case our patients may feel that we were somehow derelict in our duties. If our patient then develops and dies from an advanced cancer, we will be the one who missed it. Few will consider that the cancer might not have been present earlier or, if present, that it might not have been any more treatable.
Asking questions will help move your doctor beyond this kind of calculus. I know that some patients hesitate to ask their doctor questions. However, asking questions is the only way to participate in the decision. And you'll be pleasantly surprised by your doctor's reaction. (I, for one, am always a little nervous when a patient agrees to a course of action without asking any questions.) Here are the three questions I suggest that you focus on when the issue of testing is raised.
The reason for suggesting the test? This is an excellent question to start the conversation. The answer should give you some insight into how carefully your practitioner has thought about the test and how strongly she believes in it. I'm not suggesting that beliefs should be the deciding factor, but it is a reasonable place to start. If applicable depending on age and gender you might ask whether the doctor undergoes this test herself, or whether she recommends it for her parents.
You may learn from this exchange that your practitioner is dogmatic, which suggests that you will not get far with further questions. Or you may learn that she has thought a great deal about the issue and has some reservations about testing. Perhaps the test is "recommended" or there is some institutional goal to be met (it is always fair to ask, "Are you under any pressure to test?"). Simply by wondering "Why test?" you indicate that you know there's two sides to the testing issue. Simultaneously, you make clear to your provider that you are open to the thought of not being tested.
Has there been a randomized trial of screening for this cancer? This is a tougher question, one to which your doctor may not know the answer. If he does, however, the answer will quite possibly be no. But in some instances the answer will be yes, and then a follow-up question is called for: What did it show?
This question can help you determine whether the test has been seen as to have any real benefits. If so, you may also get a feel for how much benefit there is. Don't expect to learn about the harms of testing from this question just know they are always there. By now it will be obvious to your doctor that you want to create a considered decision.
What will we do if my test is positive? This can be a pretty basic question, but it's not asked often enough. It helps you learn about the next step before you take the first. If for whatever reason you would choose not to take that next step, it makes no sense that you should be tested; a positive result will only give you information you will not use, and it'll almost certainly make you worry.
This question tells your doctor that you're thinking ahead. You are aware that a positive test may trigger a cascade of subsequent events, and you'd like to have some sense of what these events might be and, if possible, how likely they are.
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