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The problem with Angelina Jolie’s mastectomy and breast cancer awareness

Angelina Jolie revealed in the New York Times op-ed pages today that she underwent a double mastectomy. People will call her refreshing in her honesty, courageous for having such radical surgery, and truly devoted to her family for making such a preemptive, potentially life-saving move. Indeed, Jolie is all of those things.

But will her choice influence women to do the same unnecessarily?

Jolie reveals that she has the BRCA1 gene, which her doctors estimated put her risk of breast cancer at 87%, and ovarian cancer at 50%. Her mother died of ovarian cancer at age 56, and Jolie wanted to ensure she’d be around longer for her children. The actress says she’s sharing her story with the hopes of helping save other women:

Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.

I know these stats well. Two months ago, I found a lump in my breast and had to undergo a series of mammograms and a biopsy of my right breast. It ended up being a marker for cancer known as a radial scar. At 30 and with no family history of breast cancer, this was as shocking as it was eye-opening. Suddenly, all those pink ribbons and t-shirts and walks felt relevant, a form of solidarity with other people whose intimate body parts also have been injected and squished, examined and sliced.

But a recent piece in the New York Times Magazine questions whether this sort of “awareness” is actually saving lives in the fight against breast cancer. The writer Peggy Orenstein, who has battled breast cancer, argues that the hysteria surrounding the disease has helped foundations like Susan G. Komen—and products lacquered in pink—bring in a lot of money. Early mammograms have caused women a lot of stress and increased the likelihood they’ll undergo procedures they’ll never need. Breast cancer is only deadly when it leaves the breast and mammograms will not indicate the likelihood of that occurring.

….mammography readily finds tumors that could be equally treatable if found later by a woman or her doctor; it also finds those that are so slow-moving they might never metastasize. As improbable as it sounds, studies have suggested that about a quarter of screening-detected cancers might have gone away on their own.

From Todd Tuttle, chief of the division of surgical oncology at the University of Minnesota in the Times article:

You could attribute the rise in mastectomies to a better understanding of genetics or better reconstruction techniques but those are available in Europe, and you don’t see that mastectomy craze there. There is so much ‘awareness’ about breast cancer in the U.S. I’ve called it breast-cancer overawareness. It’s everywhere. There are pink garbage trucks. Women are petrified.

Statistics mean one thing when bandied about among doctors and researchers. They’re instructive for larger trends and treatment for entire populations. But they’re entirely something else on the individual level. Given Jolie’s level of risk, her course of action seems logical. I bet many women would have done the same for 50% risk or even much, much less. Yet it’s also a slippery slope. When in the name of health and awareness and courage do we stop lopping off our breasts and take a more realistic approach to the disease? One 2012 research study concluded that three-fourths of women who had a double mastectomy didn’t need to. A lumpectomy is often the more prudent course of treatment.

In my case, test results found that there was not cancer in my breast but a variety of other suspicious cells. Now I’ll face two more mammograms and a relationship with a breast surgeon that she likes to boast is “for life.” After I read Orenstein’s story, I felt inspired to keep questioning the doctor-speak thrown my way. Women need to understand this, I thought. Our approach to breast cancer has gone overboard and is not scientifically sound.

And then I wondered how I would deal with my course of treatment. Will I push back when I learn of future risks and necessary tests? Will the statistics of thousands of random women trump the likelihood of risk for myself?

The answer is, I really don’t know. For now, I’m not doing anything drastic.

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