Protecting Women’s Agency: on prophylactic surgery for non-BRCA+ patients

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Peggy Orenstein has a really interesting opinion piece in today’s NYT on bilateral mastectomy for non-BRCA+ women, AKA “CPM.” For women without genetic predispositions to breast cancer, bilateral mastectomy does not prevent the recurrence of breast cancer nor does it lead to higher survival rates for patients. Orenstein cautions that women need to pay closer attention to the facts about recurrence and CPM when they’re making treatment choices in the wake of a breast cancer diagnosis. She’s totally right about that.

This is where she loses me, however:

“Treatment decisions are ultimately up to the individual. But physicians can frame options and educate patients in a way that incorporates psychology as well as statistics. Beyond that, doctors are not obliged to provide treatment that is not truly necessary.” (emphasis added)

The medical industry in general and the cancer industry in particular are set up to create passive patients who do as they’re told. This is doubly true for women, whose psychological and physical needs are often downplayed or outright dismissed by paternalistic physicians. Women who have just been diagnosed with breast cancer already feel confused, powerless, and betrayed by their own bodies. Do we really want to add to this psychological morass by encouraging doctors to deny CPMs to women newly diagnosed with breast cancer? I think not.

The situation reminds me of the days before BRCA testing when some women with significant family histories of breast cancer sought out prophylactic mastectomies only to be repeatedly denied the surgery. Even now, I hear stories of BRCA+ women being denied salpingectomies or other procedures by their doctors and insurance companies. It’s hard enough to make the decision to have preventive surgery without also having to deal with (primarily male) surgeons denying you the procedure you’ve chosen.

Now, Orenstein is writing about women who are not BRCA+ and the circumstances for average women with breast cancer are significantly different than the circumstances for BRCA+ women with breast cancer. For instance, CPM has been proven to extend the lives of BRCA+ women (whereas, to be clear, it’s been proven that it does not extend the lives of average women).

Still, we don’t always know if women have or do not have genetic predispositions to breast cancer. Breast cancer genetics go beyond BRCA1 and BRCA2, and women may carry undiscovered or little-studied genes that give them predispositions. I have a friend who tested negative for BRCA mutations, but every single adult woman in her family has had breast cancer. After carefully weighing her options, she chose CPM. Given her circumstances, that seems like a very wise choice to me.

Orenstein is right that women without BRCA mutations are having a lot of unnecessary surgery that generates its own risks. I’m sympathetic with her desire to inform average women with breast cancer and encourage them to make medically sound choices. I too would like to see fewer unnecessary mastectomies performed on average women. But if that change is going to come, let it come from women themselves and not from a paternalistic medical industry refusing to provide women with the healthcare they so desperately want.

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2 thoughts on “Protecting Women’s Agency: on prophylactic surgery for non-BRCA+ patients

  1. I absolutely agree.

    I think Orenstein is absolutely right about most women not needing prophylactic surgery as a means of preventing breast cancer. The problem is that cancer risk is complex and there is so much researchers learning about cancer risk genes beyond BRCA. I think this piece glossed over the complexities cancer risk. As you mention, we don’t always know if patients have genetic predispositions to cancer – and there is so much to learn. To me, that’s the real story.

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