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The risk of being too aware

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I’m a physician who has had concerns about National Breast Cancer Awareness Month for years. They persist despite my wife’s breast cancer diagnosis a decade ago (for the record, she’s fine and shares my concerns).

I worry that the campaign has led women to be more fearful of breast cancer than they need be: the “1 in 8” or “1 in 9” statistic, in particular, serves as a poster child for how to exaggerate risk (both because it encompasses an entire lifetime and because it’s not the chance of dying but of being diagnosed). Equally troubling is the relentless promotion of screening mammography as the solution.

That the campaign’s principal founder is a manufacturer of breast cancer drugs doesn’t make me feel any better. Nor does the appearance of pink as a fall color in the National Football League.

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Knowing my concerns, a reporter recently asked me, “What do you think women should be aware of?” Here’s my list:

1. Breast cancer is an important cancer.

If nonsmoking women want to worry about any cancer, breast cancer is the one to worry about. The reason is simple: It’s the cancer they are most likely to die from. But this risk should be kept in perspective: A woman’s chance of dying from breast cancer in the next 10 years is in the range of two per 1,000 (if you are age 40) to 10 per 1,000 (if you are age 75). And always consider the flip-side of these statistics: The chances of not dying from breast cancer in the next 10 years are 990 per 1,000 — or better.

If you are a woman who smokes, worry about lung cancer instead, and heart disease.

2. There is a serious debate about the value of screening mammography.

You know this. But what you might not know is that this debate persists despite 50 years of research involving more than 600,000 women in 10 randomized trials, each involving about 10 years of follow-up. No screening test has been more exhaustively studied.

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That the debate persists in the face of this wealth of data tells you something: Screening mammography must be a close call. (Note that doctors don’t debate about the value of treating really high blood pressure; that issue was settled more than 40 years ago with a trial of less than 200 men in less than two years).

The reason screening mammography is a close call is simple: It produces both benefit and harm. The combination of heightened awareness and increased screening has undoubtedly led to more breast cancer diagnosis. And a very few women have benefitted by avoiding a breast cancer death. More, however, have been harmed by unneeded surgery, radiation and chemotherapy for small “cancers” that would not have been found without the mammogram and would never have caused problems. Many more have been caught in cycles of testing, abnormal results, biopsies and worry.

3. Screening mammography is your decision, not your physician’s.

Although it’s hard to know how widespread the problem is, a number of women have shared with me that they have been frightened (“Don’t you want to live?”) or guilted (“Don’t you care about your family?”) into being screened. And it gets worse. One told me that her doctor said she could no longer be a patient if she didn’t accept screening. (Imagine my mechanic saying he would no longer work on my car if I wasn’t willing to have him check my coolant system for leaks.)

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To be fair to my primary care colleagues, such coercive practices may not reflect their own beliefs but rather that they too are being coerced. Ensuring that all women are screened has become one of the most prominent metrics in healthcare “report cards.” There are practical reasons for this: It is easy to measure, easy to understand and hard to argue against. So regardless of what informed women want, it gets done (remember, we doctors got into medical school because of our ability to get good grades).

Screening is a choice. Those who like mammography and want to do everything possible to avoid a breast cancer death should feel good about doing it every year if they wish. Those who don’t like the procedure or the prospect of being turned into a patient unnecessarily should feel equally good about not doing it or doing it less often or starting it later in life.

4. Unlike screening mammography, there’s no debate about diagnostic mammography.

Doctors agree about what to do when a women (like my wife) notices she has a new breast lump: Get a mammogram. Diagnostic mammography is the technology we use to figure out what the lump is. That’s not screening; that’s diagnosis. And no one argues about it.

5. There have been real improvements in breast cancer treatment.

Its odd how much we hear about breast cancer detection, when the real question is how well we can treat it. All the focus on screening has overshadowed a more important story: Breast cancer treatment has improved over the last 50 years. Breast cancer surgery has gotten a whole lot more sane. Radical mastectomy is largely gone, and more women are given a choice between simple mastectomy and breast-conserving surgery.

But arguably the biggest improvement involves adjuvant therapy, the chemotherapy and hormonal therapy that follows surgery. After summarizing 194 randomized trials, the international collaboration of Early Breast Cancer Trialists concluded that the addition of adjuvant therapy cuts the breast cancer death rate in half. That’s huge.

6. Too much disease awareness may not be good for your health.

Breast Cancer Awareness Month serves as a prototype for “disease awareness” campaigns. Too often these morph into campaigns to find things wrong with healthy people. Our medical care system is extremely capable in this regard. We can detect miniscule abnormalities in the body’s anatomy and its chemical milieu. And, as if that’s not enough, we increasingly change the rules to narrow the definition of “normal”: Lower blood pressures have become hypertension, lower blood sugars have become diabetes.

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Many interests are served by this behavior. But that may not include yours. That’s because health means more than the absence of abnormality. Health is also about how people feel; it’s also a state of mind. And it’s hard to feel good when things are constantly being found wrong. Pursuing health, ironically, may require that we not pay too much attention to it.

H. Gilbert Welch is a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice and an author of “Overdiagnosed: Making People Sick in the Pursuit of Health.”

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