I want BRCA1/2 testing available on demand and so does Mary-Claire King

Today NPR ran a segment on Mary-Claire King in which she argues for mass testing for BRCA1/2 in average women, similar to how I argued months ago that BRCA1/2 testing should be available on demand (that post here: I want BRCA1/2 testing available on demand).

But whereas I simply had reason and political rage to drive my argument, King has hardcore science with which to back up her argument. She and her colleagues have now shown that a woman without a history of breast cancer in her family is just as likely to have a BRCA mutation as a woman who does have a history of breast cancer in her family. More importantly, both women–those with and without family histories–have the same risk of developing breast and ovarian cancer. This is groundbreaking and a very good argument for widespread testing. 

The second woman NPR interviewed, Fran Visco of the National Breast Cancer Coalition, seems to think we shouldn’t do mass testing for BRCA1/2 because women might take the drastic action of needlessly having prophylactic surgeries. Really, it just sounded patronizing. NPR paraphrased her thusly: “Just because a woman has one of these mutations doesn’t mean she’ll definitely get cancer.” Really?! Who knew?! Thanks for the tip!

Some people make it sound like BRCA+ women are idiots who learn they have mutations and immediately run to back alley clinics to lop off their breasts with rusty cleavers. Choosing prophylactic mastectomy is a wee bit more complicated than that. And there are other options (as some women I know have chosen and been satisfied with).

I’m pretty embroiled in my corner of the breast cancer community–that is, I read around about breast cancer in general, but most of my time is devoted to the BRCA+ previvor/survivor corner of that community. But I’ve seen argument’s like Visco’s from women with breast cancer fairly often. It seems to pop up in every article on BRCA mutations these days. It makes me wonder if survivors in the larger breast cancer community still harbor skepticism towards prophylactic mastectomy, as was the trend in the 1990s (they rarely mention oophorectomy). Is that why King’s push for mass testing is meeting with skepticism from these quarters? Or is there resentment that previvors have forewarning that survivors didn’t have?

Very rarely do I see these kinds of arguments from BRCA+ women themselves. Even women who choose surveillance over surgery (like Linda Grier over at Elevated Risk) generally don’t disparage other women’s choices to have mastectomies.

(And yes, there are times when I do feel what Linda Grier (who sadly no longer blogs) has called “previvor’s guilt” that it took my aunt’s advanced breast cancer, mastectomy, chemo, radiation, lymphedema, and hard fight for genetic testing for our BRCA mutation to be uncovered. She has said that her cancer is a gift to the younger women in our family and to our female descendents, who now have the choice to take action. It is a gift, as well as a burden. And it isn’t fair to her, or my grandmother, or any other women with breast cancer who didn’t have the choices I have right now.)

I love the idea of mass testing–paired with genetic counseling, of course, and with the option for every woman to make an informed choice about whether or not to undergo testing. Some people just don’t want to know and we should respect those decisions, so long as they are informed decisions. And I love Mary-Claire King, who continues to kick serious ass.

Hereditary Breast and Ovarian Cancer Week

This week is Hereditary Breast and Ovarian Cancer Week (or HBOC Week) and last Wednesday was “Previvor” day. I did nothing to mark either HBOC Week or Previvor day. I am reluctant to do so and deeply suspicious of attempts to raise “awareness” about either HBOC, previvorship, and breast cancer in general.  As with many things BRCA+ related, my thoughts on this are messy and I wish there was a more explicit feminist dialogue on it to guide my thinking.

Awareness campaigns rarely have tangible results. What do we want people to do once we’ve raised their awareness? Perhaps we want to raise awareness so that more women will get tested. 1 in 400 people have a BRCA mutation. That’s less than a fourth of a percent. Honestly, hereditary breast cancer is irrelevant to most women. But what about those 1 in 400: we might argue that reaching that one woman out of four hundred is worth it if she gets tested. But I don’t know if I want to encourage women to get tested.

In the past I’ve tended to agree with the idea that knowledge is power, but with BRCA mutations I’m not so sure. After all, BRCA+ women have three options: 1. surveillance, which does nothing to prevent cancer in general and often fails to detect ovarian cancer in particular 2. chemoprevention, which has serious side effects and isn’t available to many women 3. surgical removal of the breasts and ovaries, which is a potentially disfiguring, emotionally horrifying choice. Testing positive for a BRCA mutation is a life changing, potentially life-ruining, and typically utterly devastating experience.

The ethics of genetic testing are highly muddled and the questions it raises aren’t merely theoretical for women like me who get handed “deleterious” test results. Sometimes I think that women who choose not to be tested have the right idea. It’s not that I think women should be uninformed. Far from it. I strive to make well-informed decisions about my health, but I wouldn’t say knowledge has been empowering in my BRCA+ experiences with the medical industry. There’s nothing about being BRCA+ that I would characterize as “empowering.”

Perhaps we want to raise awareness so that we can raise more money for desperately needed BRCA+ research. But in so doing, we run the same risks as larger breast cancer awareness campaigns: that pink ribbons will be slapped onto products that make profits for corporations or go towards administrating bloated nonprofits like the Komen Foundation, rather than actually funding research. Every October I’m bombarded with pink cupcakes and yoga mats and football jerseys. Do we really need to add the pink and teal HBOC ribbon to the mix?

At the same time, I am incredibly wary of the “previvor” label. I understand that many women want a word to name their experiences. That there can be relief in putting a name to those experiences. I want these things as much as anyone else. “Survivor”–another term I’m wary of–does not characterize what BRCA+ women who have yet to develop cancer actually go through. And yet previvorship makes me uncomfortable because it feels like a prescriptive identity that puts the onus to not develop cancer on individual women at the same time it downplays the sheer horror of being BRCA+.

Furthermore, you’re a previvor until you’re diagnosed with cancer: what then? By promoting a cancer warrior mentality, previvorship suggests that if you were a true cancer warrior you could have prevented your own cancer. If you were really hardcore, you wouldn’t have chose surveillance. Or maybe you had multiple surgeries, and should have been more rigorous in your screening. Or exercised more. Eaten better. Been a better advocate for yourself. If you get cancer, you didn’t previve, you failed. The term “previvor” tries to emphasize the agency of BRCA+ women, and I’m not so sure we have a lot of agency. False optimism is not helpful, it’s harmful. Pretending BRCA+ women have more agency than we actually do seems really dangerous to me.

I guess the gist of this is that I’m not hopeful. I’m a realist to the core, always have been. I don’t think we are winning the “war” on breast cancer. The rhetoric of hope and its happy pink iconography alienates me. At the same time, nebulous “awareness” campaigns hail women like me into getting the word out in ways that often feel exploitative and contradict the horror of my lived experiences as a BRCA+ woman. So I watched HBOC Week arrive with a sense of foreboding and held my tongue while other BRCA+ women talked about celebrating being a previvor and posted inspirational quotes online. They have a right to “celebrate” their experiences if they want to, just as I have the right to my “bah humbug.”