Followup: prophylactic mastectomy for average women

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I wanted to followup on my previous post about Peggy Orenstein’s article on prophylactic mastectomy for average women with breast cancer because I’m seeing some chat about it in BRCA+ communities that disturbs me.

First of all, some BRCA+ women are getting really defensive about the article, posting things like “PBM saved my life!” or “when I was diagnosed with breast cancer in my right breast, I had a double mastectomy and they found cancer in my left breast too!”

This makes me wonder if these women have actually read Orenstein’s article, which focuses on mastectomies for newly diagnosed women who don’t have a BRCA mutation. There have been many scientific studies about average women without BRCA mutations removing their healthy breast along with their cancerous breast after diagnosis. The scientific evidence shows that bilateral mastectomy does not improve survival rates for breast cancer patients who not have a BRCA mutation–repeat, in patients who do not have a BRCA mutation.

I don’t know why some BRCA+ women are getting so riled up about this. The circumstances of BRCA+ women are quite different from those of BRCA- women, and Orenstein’s argument does not apply to us. She makes it perfectly clear that she’s writing about “CPM” (contra-lateral prophylactic mastectomy for average women), not “PBM” (prophylactic bilateral mastectomy for BRCA+ women).

Secondly, I’ve seen women respond to Orenstein’s article by saying they feel psychologically better having had their healthy breast removed. I’ve written about the psychological reasons for PBM before, and I think psychological well-being is a perfectly valid reason for BRCA+ or BRCA- women alike to choose mastectomy. However, like Orenstein, I’m concerned that average women who are choosing CPM may be doing so without getting all the facts about it.

To me, the problems with CPM are manifold. On the one hand, many women are not familiar with issues surrounding breast cancer treatment and they have to quickly get up to speed right when the clock starts ticking after diagnosis, a moment when they may not be in the best mental state to gain literacy in medical discourses. On the other hand, doctors are not doing a good job of communicating to patients the facts about their risk of recurrence with and without CPM, nor are they doing a good job of communicating options for treatment and reconstruction.

Finally, some women seem angry at Orenstein because they simply don’t want to hear to the facts about CPM.  In Cancer Vixen, Marisa Acocella Marchetto’s friends try to get her to see a top oncologist at Sloan-Kettering, but she keeps avoiding it. Finally, she admits that she doesn’t want to see the specialist because doing so would force her to admit that she has “real” cancer, the kind that requires an expert. In other words, going to a world-class cancer hospital like Sloan-Kettering would force her to acknowledge that her life is in danger.

I wonder if something similar is at play with the backlash against Orenstein’s article. As a lifelong feminist killjoy, I know how pissed off people can get at those of us who speak hard truths. NPR recently ran a segment about a study that showed a surprising number of people don’t even want to know if they have a bad medical condition. This morning I saw one woman declare that Orenstein had a lot of nerve telling her to be well informed when she was such a wreck after her diagnosis, that she had a right to put her head in the sand. How common is this sentiment? Is it the case that some newly diagnosed women don’t want to know all the facts about CPM? Is it mentally easier for some women to just remove both breasts and move on?

The choice to have a unilateral or bilateral mastectomy, whether for prevention or treatment, is highly personal, and I have no interest in telling individual women whether or not they should keep or remove their breasts. But both patients and BRCA+ patients need to make well-informed decisions based on sound medical evidence. For this to happen, the medical industry needs to do a better job of communicating risk and treatment options to women, and women need to be willing to face the facts before choosing whatever option they deem best for their health and well being.

 

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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