"Awareness" and Breast Cancer

When Nancy Brinker's sister Susan died of breast cancer, she decided to do something about it. She founded the Susan G. Komen Foundation to make women aware of the risks of breast cancer and to promote regular mammograms. Billions of dollars later, pink ribbons are an inescapable fact of life in America, and dozens of other diseases have their own charity drives following the trail Brinker blazed.

But what if there is absolutely nothing we can do about it?

That is increasingly the message coming from cancer studies. It seems that most of the cancers detected by mammograms and "successfully treated" were never much of a threat to begin with, whereas most of those that kill people were deadly almost from the moment they arose. All of the billions spent on promoting breast cancer awareness has barely moved the risk that women will die of the disease. There does seem to be some benefit to mammogram screening in women over 40, but it is quite small; the latest figure is that annual screening reduces the chance that a woman will die of breast cancer within the decade from 0.35 percent to 0.30. But here's the really interesting thing: breast cancer screening under 50 does not increase a woman's life expectancy at all. Nobody really knows why, but probably something about being screened -- radiation, stress, unnecessary surgery on non-dangerous cancers -- cancels out the benefit of detecting dangerous cancers early. Not until women are over 50 does the benefit of screening outweigh the risk, and even then the effect is tiny.

Peggy Orenstein reviews all of this in a great article in the Times. She suggests, and I agree, that as it relentlessly expands in every direction the awareness movement has become self-destructive. Now some awareness freaks have been promoting breast self exams in teenage girls, which is ridiculous on multiple levels. First, breast self exams have never been shown to have any effect on the risk that a woman will die of cancer. Second, teenage girls are more likely to be struck by lightning than to die of breast cancer.  And then there is the psychological damage:

Beyond misinformation and squandered millions, I wondered about the wisdom of educating girls to be aware of their breasts as precancerous organs. If decades of pink-ribboned early-detection campaigns have distorted the fears of middle-aged women, exaggerated their sense of personal risk, encouraged extreme responses to even low-level diagnoses, all without significantly changing outcomes, what will it mean to direct that message to a school-aged crowd? . . .

“It’s tricky,” said Susan Love, a breast surgeon and president of the Dr. Susan Love Research Foundation. “Some young women get breast cancer, and you don’t want them to ignore it, but educating kids earlier — that bothers me. Here you are, especially in high school or junior high, just getting to know to your body. To do this search-and-destroy mission where your job is to find cancer that’s lurking even though the chance is minuscule to none. . . . It doesn’t serve anyone. And I don’t think it empowers girls. It scares them.”

More and more women diagnosed with even precancerous conditions like DCIS are opting to get both of their breasts removed as a precaution. Orenstein suggests that this is because the whole pink ribbon/awareness campaign has led a generation of women to view their breasts as time bombs, dangerous threats that they would be better off without. Have all the people promoting "awareness" stopped to think about the cost to human happiness of spending all our time being aware of the ways we might die?

I bet Peggy Orenstein will get the biggest load of hate mail received at the Times this year. Millions of women are convinced that regular mammograms "save lives," and they take all of this very personally. But the evidence that mammograms are extending many lives, let alone "saving" them, is very slim. If we redirected all the billions being spent to convince women to get mammograms, and to pay for the mammograms themselves, we could find a thousand ways to spend it that would do more to promote health.

And while I am on the subject, what is "awareness", anyway? I gather, although this was before my time, that breast cancer used to somewhat shameful, spoken of in whispers. But that was decades ago; is there anybody in America now who is not "aware" of breast cancer? So why do we need to keep raising awareness? At least the Komen foundation wants women to do something with their awareness, that is, get mammograms. What about all the other "awareness" campaigns out there? My neighborhood is full of puzzle-patterned stickers proclaiming Autism Awareness. Ok, great, I'm aware of autism. Now what? Is there anything I should do with this awareness? Or is the campaign for awareness just another way of calling attention to yourself and your own problems, a socially acceptable cry of "look at me and care about me"?

Breast cancer is a terrible disease, and I hope we learn more about how to treat and prevent it. But I suspect that whatever good has been done by the whole pink awareness campaign has been more than balanced by the harm of excess diagnosis, excess treatment, excess worry, sloppy thinking, wasted money, distorted medical policy, and self-righteous preening by advocates who don't understand that some things about life are very, very hard to change.