BRCAnomics: Who Needs Anesthesia Anyway?

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Next week is the first anniversary of my mastectomy. It’s been a crazy year of ups and downs: healing,  minor complications, tumultuous emotional fallout, revision surgeries, lingering fatigue, negotiating work while still recovering, adjusting to the new body, the angst of finding out that most of my clothes didn’t fit after so many surgeries, buying new bras and clothes for a body with proportions I’m still not used to. Seriously, y’all, those first few attempts at bra buying post-mastectomy were traumatic as hell.

It’s been a rough year, but mostly deal-able. I’m glad it’s “over”–even though I have some doubts about whether it will ever really be over. Maybe that’s what it means to be BRCA+, you stay in that liminal zone between healthy and sick forever.

Really, one thing about the mastectomy has not been manageable: my insurance company’s refusal to cover particular aspects of the pre-authorized procedure. The saga of “will they or won’t they pay for my breast surgeon?” continues. Although it does seem like there’s been some progress there. We may have finally figured out what the problem is–wrong diagnosis code. Yes, it took 11 months to get to this utterly predictable conclusion. I hope this resolves that problem, but really who knows?

And then today, I received a new bill: insurance is refusing to cover my anesthesia for the mastectomy. Again, this comes a full year after the procedure. You can’t make this shit up, folks.

I’m not going to go into the details of how absurd this is. If you’ve so much as glanced at this blog before, then you already know, so why beat a dead horse? Still, I think the financial aspects of prophylactic mastectomy need to be discussed and I feel the need to document them here. At the very least, I want other BRCA+ women to know they’re not alone.

Sexualizing cancer risk

Have you seen the The Cancer Sutra website? It promotes having people check their partners for cancer during sex.

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“Because fear of cancer can be as bad as cancer itself.
Because the earlier you detect cancer, the greater the chances
of treating it successfully.
Because fear, like cancer, may have the power to spread”

The idea that “the fear of cancer can be as bad as cancer itself” isn’t new to high risk women. Studies have shown that testing positive for a deleterious BRCA mutation has the same psychological impact on a woman as being diagnosed with cancer. But Cancer Sutra isn’t for high risk women, or even for women in general. It’s for everyone, regardless of gender or risk.

I can’t help but think of Maren Klawiter’s work on the biopolitics of breast cancer. Klawiter talks about how medicalization has sucked us all into the breast cancer continuum. Regardless of our family histories, our genes, etc., every woman resides on the continuum. We are all risky subjects. We’re taught to fear cancer and fear our potentially-cancerous bodies from an early age: to monitor ourselves and submit to screening in order to be good little patients. There’s a lot of money to made off risky subjects.

Of course, cancer and sex do overlap. Women who’ve had breast cancer and women who’ve had mastectomies must confront the knotty relations between cancer and sex all too often. That’s inevitable when dealing with surgery to an erogenous zone as highly fetishized as the breast. But this campaign is different: the Cancer Sutra wants people without high risk, without a diagnosis, without post-surgical or post-treatment bodies, to sexualize cancer. And it’s all wrapped up in a glossy package with pro-sex, queer friendly prints for sale.

The Cancer Sutra shows just have far the discourse of cancer risk has seeped into the most intimate corners of people’s lives. Now it’s not just women being targeted. As we’re constantly being reminded on breast cancer social media, men get breast cancer too–and prostate cancer and testicular cancer, etc. (you gotta love the insistent “WHAT ABOUT US MEN!” talk that irrupts in every women-dominated space). We’re beyond the breast cancer continuum here. Now all human beings can live in a constant state of cat-like cancer awareness.

Sure, a lot of people get cancer, and telling people to look out for it might seem like a no brainer. However, once again individual solutions are being posed to the systemic problem of the cancer epidemic. It’s awfully convenient, given the ruthlessly expanding cancer continuum and the ever hungry cancer industry, that we’re told to take individual responsibility for a phenomenon so very far outside of our personal control.

Eat right, exercise, think happy thoughts, and you won’t get cancer. Screen constantly, report for checkups like a good little soldier, and you won’t get cancer. If you do somehow get cancer, then it will be caught early and you’ll be a survivor. If you don’t, your cancer will be caught late, your prognosis will be bad, and it will be your own fault. Popular discourses on cancer focus on individual responsibility and individual blame. It’s much easier than fixing widespread environmental pollution, contaminants in our food and personal care products, genetic mutations, and just plain old bad luck. It’s also a lot cheaper.

The Cancer Sutra promotes the idea that groping around your partner’s body to feel for tumors is fun and sexy. Nevermind that it doesn’t actually tell people what they should be looking for during all this hot sweaty orgasmic DIY cancer screening. Nevermind that it suggests early detection is effective for all cancers (it categorically is not). Or that it suggests all cancers act alike (they categorically do not). Or that it suggests all cancers progress neatly from stage 1 to stage 2 to stage 3 to stage 4 (the don’t). And that it suggests individuals can interrupt that tidy progression to save their own lives (sometimes, often not).

If all that wasn’t troubling enough, the Cancer Sutra promotes the idea that we–each and every one of us–should be thinking about cancer rather than pleasure during sex, or rather that we should be finding pleasure in thinking about cancer during sex. How perverse is that?

BRCAnomics: On hold with an insurance representative again, or Groundhog Day edition

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As I’m writing this, I am literally on hold with an insurance company representative. I’ve got my phone propped in front of my computer on speakerphone. Terrible muzak is playing. I’m waiting for the representative to get back from talking to my breast surgeon’s office. This is my fourth phone call of the day. I’ve already made two other calls to the hospital that my breast surgeon bills through and one to the breast surgeon’s office. I’ve been on the phone for an hour and a half and counting. I’ve talked to many very nice, very unhelpful women. It’s always women–at the hospital, at the doctors’ offices, at the insurance company–why is that?

All this, because my insurance company is refusing to pay my breast surgeon for performing my prophylactic mastectomy in August. They’ve paid everyone else, but are refusing to pay him. I keep getting increasingly urgent bills for nearly $7,000 in the mail. This, on top of the bills that are legitimate that I am already paying. Now, the hospital billing department is threatening to send the bill to collections. The sympathetic finance woman in my doctor’s office assures me that the hospital billing department means business. She herself had them send a bill for $7 to collections once and dent her credit score.

Every time I get this bill, I make lots of phone calls to try to get it paid. It’s Groundhog Day: BRCA+ Edition. I call my insurance company and patiently ask what’s going on. Each time the representative tells me that the procedure should’ve been preauthorized. Each time I tell them that it was preauthorized. Each time they check their database and confirm that it really was preauthorized. Each time the representative expresses surprise that insurance is denying coverage, including exclamations like “this is crazy!”and “I don’t understand why this isn’t being covered!” These women are really nice, despite working for a Kafkaesque capitalist machine that’s trying to prevent me from ever having a life without medical debt. They make empathetic clucking noises. They assure me that they will get the problem fixed. They never do.

Yes, I agree, this is crazy. This is absurd, insane, illogical, ridiculous, bonkers, and many other less polite words. I don’t know how many hours I’ve wasted on this nonsense. I’m lucky that I have a flexible work schedule. I’m home right now, recovering from yet another surgery, so I can sit here for hours listening to muzak, trying to be polite to this representative who is jut a lowly cog in the great labyrinthine horror that is Anthem BCBS. The last time this happened I wasn’t so lucky. I was working full time and not really available during business hours, which made it even more difficult and frustrating to waste half a day on the phone trying to fix an absurd situation.

Sometimes I think I should’ve named this blog BRCAnomics. I didn’t know two years ago that I would spend so much time here chronicling the many financial difficulties of being high risk. I didn’t think I’d be caught in this mess. But the economic toll of being BRCA+ takes up an inordinate amount of my emotional energy and brain space. Again and again, I think to myself that it shouldn’t be this way: the American insurance industry is deeply unjust. Again and again, I wish I could afford to take an actual vacation.

In many ways, I’m fortunate: I have “good” insurance (is there such a thing in the United States?); I have a job that I love; I have friends and family who I can borrow money from or who flat out sent me cash to help with my surgery expenses; I’m well educated and have been able to bring myself up to speed on medical literacy; I have the aforesaid flexible schedule. Yet even with all this privilege working to my advantage, I can only describe my BRCA+ experiences as a colossal financial clusterfuck.

And, unexpectedly, it’s not just the prophylactic mastectomy that’s giving me issues. Even with my many resources, this BRCA mutation has been an economic albatross since I first sought out genetic testing. I cannot imagine what’s it’s like to live with high risk as a poor or working class woman without insurance. I don’t even want to think about how much worse this financial burden would be if I were faced with an actual cancer diagnosis.

I still can’t believe how little we talk about these financial issues in the BRCA+ community. That some people act like it’s impolite or inappropriate to talk about finances or to critique the insurance industry. That people think I’m too angry about it. Well, good news: I’m past frustration and fury. I’m exhausted.

The insurance representative just returned. She says that she has fifteen years of experience working in the insurance industry and nothing about this claim being rejected makes any sense to her. She’s going to try to fix it. I’m not too sanguine about the probability of her success. I’ll tell you one thing though: there is no way in hell I’m paying this bill.

Precision Medicine: What I Want

If I volunteer my data, I want the results back–fast. I want to short-circuit the lengthy dissemination of research results currently in place. I don’t just want my data to benefit future generations. I want it to benefit me, as soon as possible.

I want privacy. Explanations that data cannot truly be safeguarded are not good enough.

I want to be able to take action based on what I learn about my genome. I want protections beyond GINA, particularly for life insurance and disability insurance.

I want risk reducing surgeries to be covered by insurance companies in the event of a positive BRCA diagnosis. Right now, they aren’t required to cover it.

I want genetic testing on demand, with second opinions available, and covered by insurance.

I want medical literacy programs, so that patients can fully engage, have truly informed consent, and make good health decisions based on big data. I want doctors to be well educated about genetic issues.

I want far greater recognition of the ways that socioeconomic status effects access to data and healthcare. I want all people to benefit from volunteering data, regardless of socioeconomic status. I don’t want our data making corporations rich while average Americans can’t afford the innovations made from that data.

I want universal healthcare. Economic inequality is the number one public health issue facing Americans right now. There is a very real danger that the masses will volunteer their genomic data but not be able to afford the medical innovations that result from that data. We cannot allow precision medicine to become the healthcare of the rich.

I want genomic data to be shared, not hoarded by corporations as Myriad Genetics has done in the past.

I want to look at the leadership of precision medicine and see more women, more ethnic minorities, more patient advocates. I want women and ethnic minorities to be well represented in the one million volunteer cohort.

I want clear, accessible pathways for patient involvement in shaping precision medicine. I want to be included. I don’t want to be an afterthought. I want to help shape the future of American healthcare.

What do you want?

 

Precision medicine: genetic data doesn’t mean shit if you can’t afford to use it.

Image: US-POLITICS-HEALTH-OBAMA
Obama just unveiled an ambitious “precision medicine” plan and the White House is diving into precision medicine head first: epatients! genomics! big data! sexy sexy science! I guess it’s no surprise that Obama would want to jump on that bandwagon, but I’m skeptical as ever.

I’m not a fan of the idea that more technology and more bureaucracy is inherently better. BRCA+ women often get held up as examples of the benefits of personalized medicine. However, genetic knowledge doesn’t automatically give individuals the tools they need to manage their risk. In 2015, the best HBOC women can do to prevent cancer is choose among variations of the “slash/burn/poison” methods of yesteryear. While BRCA mutations have been fairly well studied for over twenty-five years, women’s options for preventing hereditary cancers have not improved much.

Even within the limits of the surveillance, chemoprevention, and risk-reducing surgery triad, many women cannot afford genetic testing or risk management. Multiple members of my own family have been unable to get tested for our particular BRCA mutation because they can’t afford health insurance, not even Obamacare, despite being employed. If my relatives scrounged together enough money to pay for genetic testing out of pocket, then they certainly wouldn’t be able to afford risk management in the wake of deleterious test results.

There are a lot of systemic problems with healthcare in the United States that need to be resolved now. Many Americans still don’t have affordable health insurance, paid paternity leave, access to short and long term disability, etc.–basic human rights that are taken for granted in Europe. Something as quotidian as childbirth often sends Americans into massive debt, never mind a major heath issue like a cancer diagnosis or a chronic illness.

At the moment, I am still suffering the financial fallout of choosing prophylactic mastectomy. And “suffering” is not an exaggeration here. I’ll be paying off the medical debts I incurred with PBM for at least two years, even though I have a good job and relatively good health insurance. In a lot of ways, I’m lucky that I could take on and manage this debt: I had access to exceptional doctors and an overwhelmingly positive experience. It’s a pretty sad state of affairs when medical debt is a privilege.

To me, these socioeconomic issues are far more pressing than personalized medicine. Massive reforms are long overdue and socioeconomic inequality in the United States is getting worse and worse. What good is genomic data if patients don’t have the socioeconomic means to put it to use?

Obama’s precision medicine plan reminds me of George W. Bush’s equally ambitious global AIDS plan, another public health initiative that was unveiled towards the end of a second presidential term. In theory, Bush Junior’s AIDS initiative sounded fantastic: billions of dollars directed at fighting AIDS in Africa, the massive distribution of AIDS drugs, new condom promotion programs, etc. In practice, however, Bush’s AIDS initiative was rushed and poorly implemented. The phrase “pissing into the wind” comes to mind.

Precision medicine is an enormous undertaking that requires careful planning. I don’t have much faith in the ability of government bureaucracies to efficiently plan and execute something so socioeconomically and ethically fraught. If Obama’s precision medicine plan is successful–and it will be a long time before we can adequately judge whether or not it is–then there are still massive hurdles to improving conditions for patients on the ground.

Maybe Obama’s precision medicine is the first step towards giving people better options. For now, we should be wary of getting caught up in the hype of precision medicine. Yes, it could lead to some great things for the HBOC community, but we need to recognize the immense challenges it poses.

If anything good is going to come out of this initiative, then BRCA+ advocates are going to have to stay on their toes, push hard for patient input, and lobby for improvements in healthcare access–that means, vehemently supporting universal healthcare, paid paternity leave, and other socioeconomic improvements  to healthcare access for the poor, the working class, and the shrinking middle class.

After all, genetic data doesn’t mean shit if you can’t afford to use it.

Should we stop telling BRCA+ women to do ovarian cancer surveillance?

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FORCE has a new webinar featuring University of British Columbia oncology professor Dr. Jessica McAlpine on the “Pros and Cons of Hysterectomy at the Time of Risk-reducing Removal of Ovaries and Fallopian Tubes.” Like all FORCE webinars, it’s worth watching.

During the Q&A, someone asks Dr. McAlpine why physicians continue to recommend screening despite the fact that it’s ineffective at diagnosing ovarian cancer (check around the 46:30 minute mark). Dr. McAlpine answers that “three fantastically well-run trials” have shown just how ineffective ovarian cancer screening is. She continues:

“I don’t think anyone’s convinced that screening makes a difference. I practiced in a center in the U.S. where they routinely recommended it, but I actually don’t think that’s correct. I think we don’t have any evidence to suggest those improve things beyond a standard pelvic exam. I think it comes down to prevention, which is you know the focus here here, risk-reducing surgery and otherwise. So I guess, why do doctors suggest it? Probably because we’re frustrated–some physicians are frustrated by their inability to offer anything more. But I think at the end of the day, the studies show an increase in unnecessary surgery with those screening modalities and that it didn’t save lives. So I would have caution with using those modalities.”

Dr. McAlpine’s response reminds me of a rather shocking slide that Sloan-Kettering oncologist Dr. Noah Kauff showed at the Joining FORCEs conference in Philly last summer. It illustrated that BRCA+ women who undergo regular screening for ovarian cancer actually have worse survival rates than those who don’t. 

The ineffectiveness of ovarian cancer screening is very well documented in scientific studies. I also have written a lot about the ineffectiveness of screening for ovarian cancer and my own run-in with what turned out to be unnecessary surgery last year:

  1. Pelvic exams are pointless, like everything else.
  2. HBOC Threat Level Orange
  3. Oophorectomy Sucks

Still, it’s rare to see someone in the greater HBOC community as prominent as Dr. McAlpine so openly admitting that ovarian cancer screening does. not. work. at. all.

What she doesn’t mention is the gut-wrenching anxiety screening causes multiple times a year; the time-consuming appointments and endless waiting rooms; or the onslaught of co-pays and other expenses–just to give BRCA+ women false reassurance.

All this makes me wonder: Why are doctors still recommending ovarian cancer screening to BRCA+ women when reputable scientific studies prove it’s useless? Why is the leadership of the HBOC community continuing to recommend it? Why am I still following through with ovarian cancer screening twice a year like a good little girl scout when I know it’s pointless or even harmful?

I know these are surprising questions for many people in the BRCA+ community. Those of us who are actively involved in HBOC advocacy know the drill: if you come from a cancer family, then getting tested, getting screened, and maybe getting surgery will empower you and save your life. It’s a reassuring soundbite, but it’s not entirely true, because we don’t have effective methods to detect early-stage ovarian cancer and the only way to save the lives of women at high risk for it is oophorectomy.

I’m considering stopping nearly all ovarian cancer screening. At this point, the only ovarian cancer screening that seems worth doing is the CA-125 test. It too is highly problematic and unreliable, but a recent study showed that it has some promise of detecting cancer once it has been administered for many years to establish a personal baseline.

We need to have an honest conversation in the BRCA+ community about whether or not we’re going to continue to encourage women to undergo psychologically, physically, and economically costly ovarian cancer screening that we already know does not save lives.

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[This quote is probably misattributed to Carl Sagan, but the point stands]

The Risky Subject in the Risky Body: On BRCA Mutations and DCIS

Peggy Orenstein’s new article “When Cancer Is Not Cancer” tackles the dicey subject of Ductal Carcinoma In Situ (DCIS).

Orenstein visits UC-San Francisco oncology professor, Dr. Laura Esserman. She describes Esserman’s office as decorated with quotes that amount to “When you challenge people’s deeply held beliefs, well, haters gonna hate.” Considering I recently told Cancer Curmudgeon and Get Up Swinging that we should make t-shirts that say Cancer Haters Gonna HATE, you won’t be surprised to hear that Esserman is a scientist after mine own heart.

At issue here is overdiagnosis, a problem in American medicine in general and in breast cancer oncology in particular. Most people tend to think of cancer as something you either have or you don’t have, when in fact cancer is more like a spectrum. Multiple stages stand between a healthy breast and deadly invasive metastatic cancer, including hyperplasia, hyperplasia with atypia, and DCIS.

DCISrange

Orenstein’s article is worth quoting at length.

“Esserman has focused on ductal carcinoma in situ (DCIS), an overgrowth of cells in the milk ducts. DCIS was rare before universal screening. It now accounts for 30 percent of breast cancers — nearly 65,000 cases a year. With its near 100 percent cure rate, DCIS would seem like a triumph of early detection. Except for this: In 50 to 90 percent of cases (estimates vary widely), it will stay where it is — “in situ” means “in place.” It lacks the capacity to spread, so by definition, it will never become life threatening. Yet because there has been no way to predict which cases might morph into invasive cancer, all are treated as potentially lethal. By 2020, 1 million women will likely be living with a DCIS diagnosis. If, conservatively, half are harmless, that means hundreds of thousands of women will have been overtreated, enduring the physical risks and psychological devastation of any cancer patient.”

Certainly, average women are being overdiagnosed with breast cancer and this is not likely to change any time soon. Quite frankly, the cancer industry makes a lot of money by putting women through needless surgery and treatment. Not coincidentally, women have been trained to remain hyper-vigilant about early detection, despite the fact that early detection doesn’t work. As Orenstein and Esserman discuss, if early detection actually saved lives, then the increasing diagnosis of DCIS (AKA “stage 0 breast cancer”) would dramatically improve survival rates. That hasn’t happened.

Together early detection (the pinkwashed cult of mammography, self breast exams, etc.) and overdiagnosis have dramatically extended the “breast cancer continuum” that Maren Klawiter discusses in The Biopolitics of Breast Cancer:

“The movement of the mammographic gaze into asymptomatic populations transformed a relatively clear either-or distinction into a more fluid, fuzzily bounded, and ambiguous breast cancer continuum. Instead of the temporary, either-or sick role of the earlier regime, the regime of biomedicalization created the ‘risk role’ for its new subjects–a role that required that the regime’s risky subjects take up permanent residence along the breast cancer continuum” (86).

I named my blog the risky body long before I read Klawiter’s book, because I wanted to highlight the way that genetic testing turns subjects into objects–in other words, how deleterious BRCA+ results turn women into mere bodies defined by incalculable risk. Thus the headless woman in my blog header. So you can imagine how excited I was when I read Klawiter’s chapter about “risky subjects.” She describes how the medical industry has radically expanded the breast cancer community to include asymptomatic women through proliferating screening methods and pinkwashed discourses, thereby “reconstitut[ing] adult women as risky subjects” (85). My excitement about Klawiter’s work can most accurately be rendered thusly:  !!!! OMG YES ^THIS !!!!

It’s clear that overdiagnosis is a massive problem fueled by capitalist interests invested in a cancer industry that turns nearly all adult women into risky subjects in need of constant cancer screening and/or treatment, regardless of whether or not such actions actually improve women’s health and wellbeing. We need more critiques like Klawiter’s, Samantha King’s, and Gayle Sulik’s to help average women understand–and hopefully resist–the medical ideologies they are being subjected to.

But what does all overdiagnosis mean for BRCA+ and other HBOC women?

Obviously, the discovery of BRCA1 radically expanded the breast cancer continuum in the early 1990s, and, in some ways, HBOC women became the ultimate risky subjects. If DCIS is an un-cancer, then so are BRCA mutations. By this I mean that neither DCIS nor BRCA mutations are cancer until suddenly some day for some women (who we can’t single out in advance) they do in fact become cancer.

How many women are subjected to antiquated, ineffectual, expensive, time-consuming, and stressful screening methods to find those women who will actually develop breast cancer? Sure, we know BRCA+ women are far more likely than an average woman to develop cancer. However, screening alone isn’t prevention. It does save some lives, but not nearly as many as you’d hope it would. Is it any wonder so many BRCA+ women drop surveillance entirely after a few years?

It’s a frustrating situation if you’re like me: a BRCA+ feminist who wants to resist pinkwashed capitalist medical ideologies (if that’s you, then CALL ME MAYBE (or maybe just tweet me @theriskybody maybe because calling would be rather creepy)). I don’t want to be a dupe of pinkwashers and the cancer industry. I want solid scientifically proven methods for preventing, detecting, and treating breast and ovarian cancer. There ought to be a better way of handling things, but right now there isn’t.

While I know screening methods for breast and ovarian cancer are woefully ineffective for both average and HBOC women, I still feel viscerally compelled to be a “responsible patient” by submitting to rigorous screening several times a year. I struggle against being a risky subject in a risky body, however subjectively and genetically inevitable that may be. Honestly, BRCA+ ideological and practical clusterfucks like this made prophylactic mastectomy a no brainer for me.

[P.S. An incomplete draft of this post was accidentally published last week, and when I took it down I lost the great comment someone had posted–sorry about that!]

You are not required to be pretty

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[This meme shows up on my Facebook newsfeed periodically. It’s easy to see why. Although it is attributed to Diana Vreeland, the quote originates from Erin McKean’s blog A Dress a Day. You can read her wonderful post here.]

Jessica Queller’s Pretty is What Changes (2008) takes its title from Stephen Sondheim’s song “Sunday in the Park with George.” Queller uses the relevant verse as an epigraph to her memoir: “Pretty isn’t beautiful, Mother/ Pretty is what changes/ What the eye arranges/ Is what is beautiful.” A lovely sentiment–that beauty is in the eye of the beholder, as Queller explains in this NPR segment–especially given the way Queller details her fashion designer mother’s troubling obsession with beauty.

Given this critique of beauty standards and Queller’s attempts to position herself as the nerdy ugly duckling in a family populated by glamorous women, it’s surprising that Queller talks about putting on makeup before her prophylactic bilateral mastectomy and placement of expanders for reconstruction: “I had put on a little blush and lipstick that morning while dressing for the hospital. I was, after all, my mother’s daughter” (201). Before Queller’s surgery, her sister Danielle tells her that a young male doctor is being flirtatious and Queller exclaims “Thank goodness I put on blush this morning!” (201). When she wakes up after the procedure, Danielle says “You’re the only person who could come out of five hours of surgery with her blush and lipstick looking fresh and rosy!” (202).

Before her exchange surgery, Queller says that she feels tired, so “I certainly hadn’t bothered with makeup” (208). However, as she’s waiting in pre-op before the surgery, the same attractive doctor appears to say hello and mentions that he’ll check in on her during recovery.

“Dr. Kutchin left, and Dani and I turned into giggling, frazzled eighth graders.

‘Did you bring my makeup? I need some blush!’ I cried.

‘Yes–it’s in the bag. He likes you!’

‘I look like hell–he said he was going to visit in recovery!”

‘Don’t worry.’ Dani took out a makeup brush and dusted my cheeks until they were rosy. ‘All better.’ (208).

So much for following through on the promises of the book’s title and epigraph. It’s disheartening that these scenes come towards the end of the memoir, when Queller has already detailed the many problems with her mother’s obsession with beauty. In the end, her book shows that BRCA+ women can stay pretty despite the physical and psychological stresses of grueling risk-reducing surgeries. Maintaining dominant white beauty standards is as easy as blush and lipstick.

This obsession with maintaining prettiness during mastectomy isn’t limited to the BRCA+ community, of course. It also pops up in Marisa Acocella Marchetto’s comic Cancer Vixen (2006), a book with so many ideological problems that I’m going to restrain myself and just mention her constant evocation of MAC cosmetics.

And of course, there’s Geralyn Lucas’s Why I Wore Lipstick to My Mastectomy. I heard Lucas speak at the Joining FORCEs conference last summer and she made it seem as though wearing red lipstick into her surgery was a performance of the kind of person she wanted to be throughout her experiences with breast cancer: bold, confident, strong, feminine. The book actually treats lipstick in a far more complicated manner than this and I don’t have time to deal with it fully here. Suffice it to say that somestimes she depicts applying lipstick as a confident act and sometimes it seems more like an act of desperation. Still, Lucas not only wore lipstick into surgery, but also named her memoir after this gesture.

Encountering the makeup trope repeatedly in supposedly empowering breast cancer and BRCA+ memoirs, all I can think is “For fuck’s sake, am I the only one who read The Beauty Myth?”

When I told someone I was going to write a blog post on wearing makeup into surgery, he said “Why bother? It’s obviously stupid. It’s not worth your time.” In some ways, he’s right: wearing makeup into surgery is clearly a bad idea–just ask your surgeon. But I think the problem of pretty goes far beyond Queller, Marchetto, and Lucas. It’s symptomatic of larger trends in breast cancer and BRCA+ discourses, which are still dominated by a certain kind of white middle-class femininity. Such conventional beauty standards are especially on display this time of year, as we enter the annual pink orgy that is Breast Cancer Awareness Month (a “month” that now stretches its tentacles into September and November).

To be clear, I’m not talking about body image issues surrounding mastectomy, chemotherapy, radiation, and/or reconstruction here. I’m talking specifically about beauty standards, the pressure to return to “normal” femininity and behavior as quickly as possible (or preemptively in some cases), and the ways in which conventional femininity is repeatedly presented as a form of empowerment to women grappling with major health issues like BRCA mutations and cancer.

The idea that women can and should be pretty while undergoing mastectomy has a long institutional history in Reach for Recovery programs in the mid-twentieth century. Such programs helped women return to conventional gender roles as quickly as possible. They were given prostheses, wigs, and make up, and taught how to use them despite limited range of movement after disfiguring Halsted mastectomies.

Reach for Recovery not only helped women look their best more quickly, but also helped women hide the fact that they were undergoing treatment for breast cancer at all. To put it in Maren Klawiter’s terms, such programs upheld the “architecture of the breast cancer closet.” It’s a familiar sentiment to anyone who has paid any attention to Bright Pink’s annual corporate-sponsored tribute to heteronormative white middle-class beauty standards, Fabfest.

So for the record: you are not required to be pretty, ever, but you are especially not required to be pretty before, during, or after fucking surgery. Wearing makeup into surgery isn’t empowerment. It’s a displacement at best, pure patriarchy at worst.

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.)

BRCAware

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.