This Body is Political, or BRCAnomics: The “Fuck Republicans” Edition

 

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Most people in the BRCA+ community adhere to a “no politics” rule. In some ways, it’s a good rule. When election season comes, I don’t want to wade through posts by Rand Paul supporters when I’m trying to keep up to date on HBOC news. Women with BRCA+ mutations come from many political and social backgrounds; the “no politics” rule helps keep the peace.

The problem with this well intended rule is that bodies are political; cancer is political; health is political; BRCA mutations are political; and being a woman is really fucking political. The issues that BRCA+ women face when navigating their options for risk reduction are affected not only by larger socioeconomic factors like race, class, sexuality, region, etc., but also by the political climate in the countries where they live.

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The political climate in my country, the United States, is completely and utterly fucked right now in ways that limit access to healthcare for many citizens, particular women and people of color. The United States is the only industrialized country in the world without universal healthcare. See that map right there? The green countries have universal healthcare and the grey countries do not. America, you’re taking a backseat to Greenland, Bhutan, and Qatar.

At the same time, Americans spend more on healthcare than any other industrialized nation. Even with the improvements made by the Affordable Care Act, many Americans still don’t have affordable health insurance. And having insurance often isn’t enough. Many families that do have insurance are bankrupted by a cancer diagnosis or other major illness, not to mention random accidents like a car crash or the exorbitant routine costs of things like childbirth and root canals.

BRCA+ social media is filled with women lamenting the outrageous costs of genetic testing, surveillance, risk-reducing surgeries, and cancer treatments. I have written about my own financial struggles with BRCA+ healthcare here on the risky body:

I’ve struggled with the economic burdens of being BRCA+, despite having a good job and ostensibly good health insurance. And I’ve never had a cancer diagnosis either.

Now, the Republican party and its corporate allies are challenging the Affordable Care Act, yet again. They’re taking it before the Supreme Court and if they win then the 11 million Americans who’ve received health insurance through Obamacare will likely lose it. As a well-educated professional woman, I know I should use my words and craft a reasonable response to this utterly unreasonable news. Well, fuck that: all I could think when I saw this story was “YOU FUCKING ASSHOLES.”

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Obamacare doesn’t go nearly far enough, but Republicans want to take even that away from America’s poor. That’s pretty ironic, since federally elected politicians have amazing healthcare plans, subsidized by tax dollars–which means they’re trying to deny the same benefits to the people who elected them in the first place. How many BRCA+ women are voting for these men who want to deny healthcare to millions of people?

Healthcare is a fundamental human right–or rather, it’s a fundamental human right in most countries, but not mine. I’m sick of this shit.

Healthcare is political; BRCA is political. You can’t really talk about universal testing or precision medicine or breast cancer without talking about the formidable barriers to access to healthcare in the United States. You can’t be a patient advocate without supporting universal healthcare in this country. Period. Full stop. End of story.

The HBOC community needs to talk politics. It’s long overdue.

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.

The Ethics of Corporate HBOC and BRCA+ “Advocacy”

I’m feeling pretty pissy today about for-profit genetic corporations trying to co-opt BRCA+ and HBOC advocacy. I had a terrible fucking day full of HBOC-induced suffering. This was one of those days when I just felt cursed by being BRCA+. A day that involved not just one, but two emergency doctor visits, a whole day of sitting in waiting rooms, plenty of being patronized and jerked around, and a minor procedure that left me bleeding, crying, and defeated.

I came home exhausted and desperate to decompress, so I set myself up in my recliner with my comfy blanket, I put on some terrible TV show on Netflix, and I logged on to twitter to catch up on the day’s HBOC tweets. I found the #BRCA stream filled with sponsored tweets for a certain genetics company. Again. I cannot possibly be the only one who has noticed the spamming of the #BRCA hashtag with advertisements for this particular company’s genetic tests in the last few months. I’m over it.

Remember when Myriad Genetics set up that lame twitter account called @mysupport360 that was all “yay, BRCA+ empowerment! Give us yer money!” and tried to pretend it wasn’t related to their company? Andrea Downing, Teri Smieja, and I had a good time lampooning that lame attempt at using social media to lure in clients (this episode is documented over at Brave Bosom). Andrea also has this post on another one of Myriad’s unscrupulous attempts to dupe the HBOC community.

But Myriad Genetics aren’t the only ones playing this game. Other genetics corporates are using social media to draw in BRCA+ and HBOC patients. Forging friendships and alliances with individual patient advocates both within and without the BRCA+ community can be really wonderful for BRCA+ women, both personally (friendships with people in similar circumstances!) and also in terms of advocacy (strength in numbers!). The only problem is that some patients are being paid or given perks to advocate not only for their particular diseases or disabilities, but for particular genetic corporations.

I found this out the hard way when one of my favorite bloggers started spamming the #BRCA stream with advertisements for a certain genetics company. I tweeted her and asked what her particular relationship with that genetics company was. She direct messaged me and said they sponsor her advocacy, allowing her to do way more than she would be able to otherwise. Then she asked me to delete my tweet. I did, because I like most of her tweets. I’m not naming names here, because I respect this particular blogger’s writing and her advocacy is important (although I’m sure this post will piss her off and probably ruin our twitter friendship. That sucks.)

Recently, I’ve been noticing more of this sort of thing within the BRCA+ and larger cancer genetics community. Start paying attention and you’ll find lots of sponsored tweets–sponsored tweets that are never identified as sponsored, naturally. I expect that sort of behavior from Kim Kardashian, but I find the lack of transparency of sponsored posts in the HBOC and BRCA+ communities (both on twitter and other social media sites) profoundly disturbing.

Even more, I find the spamming of the #BRCA hashtag with tweets that are really ads for a genetics company particularly offensive because I consider that hashtag to be a lifeline to BRCA+ information, support, and genuine community building. I depend upon that hashtag for information and community every. single. day. No exaggeration.

I’m not saying people whose advocacy is being funded by genetic corporations are not actual advocates. In fact, the trend I’m noticing is that individual people start off as amateur advocates–they start blogs, they begin to tweet, they build websites, they post on BRCA+ message boards, etc.–and then are noticed by and recruited by genetics corporations who offer to help them expand their advocacy. It sounds awfully tempting.

Take, for instance, the #BeBRCAware campaign, which I first encountered at the Joining FORCEs conference in Philly. I asked the man at the booth what #BeBRCAware was all about. He told me that it was an effort to train women to become ambassadors for BRCA+ awareness. He said they even fly out potential advocates–if I recall correctly, to California–for this training. “Sign me up!” I thought.

After all, I already devote countless hours to BRCA+ and HBOC advocacy; it would be great to have some professional training and institutional support. And you know what, all this blogging and tweeting is hard work. I research stuff. I read lots of medical articles and tons of books to provide accurate information. I spend a lot of time talking to women who need emotional support or who are seeking resources. Advocacy is WORK and for me it’s an unpaid labor of love (I hate cliches, but it’s true in this case).

That’s when I noticed the small AstraZeneca logo on the booth and I was like “Oh, hells no.” Why? Because we can thank AstraZeneca for the clusterfuck that is Breast Cancer Awareness Month. Their unethical practices in jump starting Pinktober are very well documented. Here’s a quote (the tip of the iceberg really) from a frequently circulated article called “The Dark Side of Breast Cancer (Un)Awareness Month”:

“AstraZeneca, manufacturer of the blockbuster breast cancer drugs Arimidex and Tamoxifen, was formed through the merger of Astra AB and Zeneca Group (a pharmaceutical subsidiary of Imperial Chemical Industries) in 1999. Imperial Chemical Industries, a multinational corporation responsible for producing carcinogenic petrochemical derivatives such as vinyl chloride and pesticides, founded National Breast Cancer Awareness Month in 1985, in partnership with the American Cancer Society, in order to promote the widespread adoption of x-ray mammography, whose horrors we have documented elsewhere.

Sadly, Breast Cancer Awareness Month is a time of increasing awareness not of the preventable causes of breast cancer, but of the breast cancer industry’s insatiable need to both raise money for research into a pharmaceutical cure, and to promote its primary means of “prevention”: early detection via x-ray mammography.”

So basically AstraZeneca profits from producing products that give women breast cancer, profits from producing products that diagnose breast cancer, and then profits producing drugs that chemoprevent and also treat breast cancer. They’ve really got all their bases covered, don’t they? They profit from every single aspect of breast cancer risk and diagnosis. But it’s not in women’s best interests. And now they’ve set their sights on BRCA+ and HBOC women, because the Supreme Court nullified Myriad’s patent on BRCA testing.

(BTW, If you’re interested in AstraZeneca’s unethical practices, check out Gayle Sulik’s Pink Ribbon Blues,  Samantha King’s Pink Ribbons, Inc., and Maren Klawiter’s The Biopolitcs of Breast Cancer –all of them are required BRCA+ bookshelf reading.)

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BeBRCAware has got a glossy twitter account and hashtag. They play the social media game way better than Myriad Genetics.  I see prominent BRCA+ advocates following this twitter account. Maybe they’re simply hate-following it. I hate-follow Myriad Genetics’s twitter account so I can stay on top of their unethical shenanigans. But I also see BRCA+ advocates posting pictures of themselves in the BeBRCAware photobooth at the Joining FORCEs conference (my photo of it above) celebrating their BRCA+ pride. Do they really trust AstraZeneca? Do they even realize what it means that AstraZeneca is promoting this campaign?

The profit motive here is obvious: the more people “advocating” for genetic testing, the more women will consider it and seek it out. Consequently, profits for corporate genetics (for testing itself), the mammogram industry, and Big Pharma (for chemoprevention) will grow. Post-Angelina Effect, genetic testing for BRCA testing has doubled. There’s a lot of money to be made off of desperate women from cancer-prone families who suspect they have a BRCA mutation. Corporations are happy to pay for advocacy to get in on this BRCA testing goldmine. It’s capitalism, stupid.

Have we learned nothing from the Myriad Genetics patent fiasco? Corporate genetics is about profits, not patients. Sure, patients may benefit from genetic testing, but genetic corporations are not motivated by altruism. They’re motivated by profits. And the profit motive has historically held up advancements in BRCA+ and HBOC research that could literally save women’s lives (which is why we have the Free the Data movement)

I’m not saying that strategic alliances with corporations should be utterly verboten. However, if you allow a genetics corporation to “sponsor” your advocacy, then you are entering an ethical minefield, even if you’re transparent about it (which most people aren’t).

The BRCA+ community needs to have a discussion about the ethics of for-profit genetics companies paying for “advocacy”–AKA advertising–from individual advocates with high profile presences within BRCA+ social media.

If you are a BRCA+, HBOC, or cancer genetics blogger, tweeter, or advocate taking money or free trips or other perks from genetics corporations, then you need to be very up front about that. Otherwise, you’re not an advocate. You’re an undercover employee of a genetics company.

 

Scaremongering non-BRCA+ young women

Bright Pink recently posted an article on Facebook about breast cancer risk factors for college-aged women with the following quote and commentary:

“‘Unfortunately, college-age women generally do not consider themselves at risk for breast cancer,’ said Dr. Mercier. ‘However, there are several risk factors that contribute to the development of breast cancer that need to be understood early in life to prevent the development of breast cancer down the road.’

Further support for starting this conversation NOW. Join us in learning what you can do as a young woman to reduce your risk for breast and ovarian cancer. http://www.brightpink.org/awareness-to-action/risk-reduction/’

Huh?

The article ominously notes that breast cancer “can strike at any age.” That’s true, but misleading. Breast cancer can indeed strike at any age. The youngest breast cancer survivor was just 11 years old. However, there’s a difference between what’s possible and what’s probable. Your average 30-year-old woman has just a .44% risk of breast cancer. The vast majority of women in their 20s do not get breast cancer.

You might say that it can’t hurt to make women in their 20s aware of their future risks. After all, 1 in 8 women in the United States will get breast cancer, which means that an American woman has a 12% risk of developing breast cancer in her lifetime. Shouldn’t young women be warned? I’m skeptical of that argument. Most women are already “aware” of breast cancer. They know that they should eat healthy and exercise. They know that they should have annual gynecological visits that include breast exams. They know that they are supposed to perform self breast exams (despite the fact that self exams have not proven beneficial at early detection).

At the same time, American women are at high risk for many different diseases: diabetes, heart disease, lung cancer, osteoporosis, Alzheimer’s, and many others. In fact, women are greater risk for developing lung cancer and heart disease than breast cancer. Should we be warning them about these diseases too? Are young women supposed to spend their time “preventing” these diseases? That information is already out there, saturating the news, twitter, Facebook, women’s magazines, and so many other venues.

I do think that women in their 20s should be informed about breast cancer, just as they need to be informed about reproductive health in general, sexually transmitted diseases, and birth control. But there’s a difference between being informed and scaremongering.  Note the rhetoric: breast cancer “strike[s]”–it lays in wait like a biological cobra or tumorous lightning bolt; no one is safe. While there is a grain of truth here (insofar as breast cancer cuts across age, class, race, culture, and other vectors of identity), the truth is most women in their 20s do not need to be extra vigilant about breast cancer.

Moreover, it seems odd to me that Bright Pink, an organization for young BRCA+ women, would be advocating this much foreknowledge and vigilance for young women in general. BRCA+ women live in fear of cancer and with good reason. Those who test positive for a mutation at a young age spend most of their lives haunted by the threat and/or experience of cancer, but that doesn’t mean that average women of average risk should as well. There is such a thing as too much awareness, especially when it’s not backed up by good science and common sense. We need to find the line between promoting health and promoting hypochondria.

I want BRCA1/2 testing available on demand.

90% of BRCA+ women don’t know that they carry a mutation and under the new preventive guidelines issued by the U.S. Preventive Services Task Force, many women will never know they’re BRCA+.

This kerfuffle brings to mind the recent 23andme debacle in which the FDA shut down direct-to-consumer testing by claiming that there was a chance of false positives that might led misinformed people to take drastic action. The example they used is that a woman using 23andme’s services might test positive for a BRCA mutation and then get an unnecessary prophylactic mastectomy. It’s a ridiculous example, since women can’t waltz into a surgeon’s office and cavalierly get a mastectomy. Doctors do not accept 23andme’s testing. In cases where women have tested positive for a BRCA mutation through 23andme, their doctors ordered genetic testing to confirm the results. There are many stories of this floating around the online BRCA+ community and no stories of false positives leading to unnecessarily prophylactic mastectomies.

I can’t help but notice how few women these new guidelines will actually serve. Just 10% of women will qualify for genetic testing. These women are deemed “high risk” because they have a number of close family members with breast or ovarian cancer. Under these guidelines, I would not have been tested for a BRCA mutation. I did not have a strong family of breast and ovarian cancer–or so I thought. Just a few years ago, I believed that there were only two cases of breast cancer on my father’s side of the family. Over the course of 15 years of annual gynecological visits and breast exams, my doctors repeatedly reassured me that these two cases were probably sporadic and that my risk was normal because breast cancer risk is inherited matrilineally. They were, obviously, wrong: breast cancer risk is inheritable patrilineally, as well as matrilineally.

Even if my doctors had been better informed, even if they had been aware that women can inherit their breast cancer risk from their fathers, they still would not have recommended BRCA testing for me under these new guidelines. As one doctor comments: “There is a very clear-cut algorithm for whether or not to test someone for a BRCA mutation […] Simply having breast cancer in the family is not sufficient.” Certainly, two cases of postmenopausal breast cancer in my family did not appear to present a pattern of hereditary cancer to my doctors. And yet, here I am, BRCA+.

All these years, I believed myself to be among the 90% of women with an “average” risk of breast cancer. I don’t think my former ignorance is unique. Women may not always know their family medical histories. This is particularly true of breast and ovarian cancer, which until the 1990s were considered shameful and inappropriate to talk about. The only reason I received genetic testing at all is because one of my father’s relatives fought hard to get herself tested despite the reluctance of her doctors, who dragged their feet for months. She tested positive for a mutation and so did I. It wasn’t until that point that I discovered my family’s extensive history of breast cancer and other BRCA-related cancers.

So now I’m wondering: if 90% of BRCA+ women don’t know they have a genetic mutation that puts them at risk, and if many women don’t know their family medical histories, then how are genetic counselors going to correctly identify that 10% of high risk women who should be tested? After all, to even talk to a genetic counselor, a woman needs to be referred by her doctors. And doctors are notoriously ignorant about BRCA+ issues (see Teri Smieja’s book on this). Still, the “USPSTF recommends against routine genetic counseling or BRCA testing for women whose family history is not associated with an increased risk for mutations in the BRCA1 or BRCA2 genes.”

Genetic testing for BRCA mutations should be widely offered and available on demand.

Here are some arguments against this (and why those reasons are stupid):

1. It doesn’t make sense to screen widely for a mutation that so few women actually have. BRCA+ women make up less than 1% of the population, but we already screen people for other rare diseases. For instance, only .66% percent of women get cervical cancer, yet we screen for that annually as soon as girls become sexually active. At the same time, 1% is a huge number of people when you consider that the population of the U.S. is over 300 million people.

2. It would cost too much. Many people have complained about the cost of genetic testing. However, now that Myriad’s patents have been invalidated by the Supreme Court, other genetic laboratories are now offering BRCA testing and this competition is driving the price of tests down. What’s more, BRCA testing is (usually) a one time event and that means a one time cost. If testing were available on demand, then insurance companies would have to cover it the way they cover cholesterol tests and pap smears.

Returning to the example of cervical cancer screening, surely it’s cheaper to test for a BRCA mutation once than it is to test all sexually active women and girls annually for cervical cancer. Nor is it cost-effective to do annual mammograms for women over 40, yet we still do even though it isn’t beneficial as BRCA testing. U.S. medicine is not cost-effective in general. That’s a genuine problem that needs to be solved, but in the meantime I doubt widely available BRCA testing would be the straw that broke the camel’s back.

3. Genetic testing should not be taken lightly and many women may not be ready to deal with deleterious results.  I don’t actually think that most women undertake genetic testing lightly and I doubt that most women would even do BRCA testing if it were offered by their doctors–a lot of people simply don’t want to know and that is a valid choice. Even if some small minority of women were to blithely rush into testing, you cannot protect people from their own stupidity. Nor can you deny well-informed women access to their data because of an infinitesimal number of idiots.

As for women not being ready to deal with the news that they are BRCA+: is anyone? It’s bad news, no matter how you parse it. This is why the profession of genetic counseling has emerged over the last two decades to help people deal with bad news about their genes. While I have had very bad experiences and would personally like to avoid it in the future (that’s a whole ‘nother post), freely available BRCA testing would still have to involve professional genetic counseling. And again, hand-wringing paternalism has no place in modern medicine.

The USPTF has “warned that unnecessary BRCA testing could potentially cause harm.” I don’t buy it. Now that we’ve won the skirmish over genetic patenting, “BRCA TESTING ON DEMAND!” should be the next BRCA+ battlecry.

On a related note, FORCE has identified some other problems with the new guidelines. Go sign their petition here.

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.”