PRUDENT POLICIES
So far I have suggested ways of gathering information that might be relevant to your decision. I have avoided being prescriptive for ultimately, the decision is your own. But there are four policies I do desire to be more directive about. I believe each can help minimize some of the problems of testing.
Tell your doctor you understand there are reasons not to be tested. Doctors assume patients want tests. Consequently, our default action is generally to order them even when we think it might not be the most sensible move to make. You can change that dynamic, however: tell your doctor that you understand there might be downsides to testing and that you want to pursue a more balanced approach. Quite simply, give your doctor permission to consider not testing. It may lead to a more considered style of practice not just with regard to testing, but with regard to medical care in general.
Don't overreact to abnormal test results. If you're tested, you have to be ready for a result that is abnormal, but not markedly so. The aggressive approach is "to get to the bottom of things" with additional tests and/or biopsy. Some doctors pursue this strategy because they believe it is the correct one, but many pursue it because they believe it is what patients want or because they fear being sued for malpractice. All abnormal tests are not equal, though, and while markedly abnormal results are often indicative of real disease, barely abnormal results are generally where false positive tests and pseudodisease come from.
So this is where patience comes in: it generally will work better to repeat the test in a few months than to act now. You've got a choice about what to do following abnormal Pap smears, suspicious mammograms, and slightly elevated PSAs. Many doctors recognize the prudent approach is to repeat the test at a later date. They'll be pleasantly surprised for those who have considered this option as well. Have another pathologist evaluate small cancers.
For those who have a small cancer diagnosed or when there is any ambiguity about the diagnosis, consider having a second pathologist consider the tissue. But do your best to guarantee the second reading is truly independent of the first that is, that the second pathologist does not know the first diagnosis.
This suggestion doesn't mean I think pathologists are a number of sheep, simply that they're human. As an analogy I like to quote an expert on underwater recovery operations, whose simple rule for the technicians viewing video imagery of objects in a shipwreck is that no one can say aloud what he thinks he sees; instead, each writes down his independent interpretation.
Otherwise, they all arrive at a "conclusion that has more to do with social dynamics . . . than the reality of the situation."2 Independent observations are every bit as important in pathology as in recovery operations. Try to locate a second pathologist who doesn't work with or better yet, doesn't even know the first. Various websites exist that will help with getting a second opinion.
Consider a menu of treatment options. Finally, you have the question of what to do about a cancer detected by screening. Do not get pushed to act before you have had time to think. Most people overestimate the importance of acting quickly; remember that the chance you caught a cancer that was destined to kill you during the one week you could prevent it from killing you is infinitesimally small. You have time to think through your decision, and you should take the time to find out about the disease and your treatment options including the more conservative ones.
It's also wise to know that the screen-detected cancer will be less aggressive than the cancer with symptoms. And if pathologists disagree about whether cancer is present in the first place, the growth will probably be even less aggressive. Fundamental essentials cases where simply watching the abnormality for some months could be the best course of action.
WRONG REASONS TO BE TESTED
While there may be no wrong decisions, there are certainly wrong reasons to be tested. Two in particular stand out.
Someone else wants you to. One wrong reason to be tested is because you think it will please someone else. Spouses and other family members one thinks of here; so do close friends. But another person some may feel obliged to please is the doctor.
Patients may worry that they will disappoint their doctor and that a disappointed doctor might abandon them. For most primary care practitioners, this concern is unwarranted. Practitioners as a rule value highly the principle of patient autonomy; quite simply, we respect what individual patients want. Although a few doctors may become angry with patients who do not do as they say, that is a bad reason to be tested for cancer and probably a good reason to find another practitioner.
The powerful (and misleading) personal anecdote. You've heard the stories, whether from friends and acquaintances or propagated in the media. A person whose "life was saved by a test"; another who died simply because his cancer wasn't "caught early." That's powerful stuff. But while the facts of the individual cases may be accurate, the conclusion that cancer testing must save lives is not.
Stories are not a reason to get tested for cancer. People whose lives were allegedly saved might not have needed treatment, or they may have been treated just as successfully years later. Or they may die of their cancer anyway and simply end up having known about it longer.
People whose lives were allegedly lost by the lack of testing might not have been treated any more successfully with early diagnosis, or testing may have missed the cancer. The reason to get tested for cancer is because it really saves lives (something that takes thousands of cases to prove), not because someone testifies that her own life was saved or that someone else's could have been.
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