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.

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.

BRCAnomics: Don’t Buy into Cancer Consumerism

Ah, the shower shirt ($78 + shipping), a garbage bag for showering after mastectomy. I remember seeing these kind of things when I was planning my surgery and wondering if I needed them. I was terrified and tried to micromanage the entire situation. I was ready to empty my bank account to make the experience even a smidgen less awful.

To all the scared women facing mastectomy and wondering if you need a shower shirt, I get it. I’ve been there. Now, I’m here on the other side of mastectomy to tell you that you do not need this shit.

You don’t need axillapillas ($20 + shipping each), for under your arms–regular pillows work just fine. You don’t need pink pockets ($19.99 + shipping) to hold your drains–pinning them to your mastectomy bra works just fine. You don’t need the brobe ($89.99 + shipping) to carry drains and cover up–regular pajamas and bathrobes work just fine.

Most of these products, and a zillion others, are made by companies founded by well-intentioned women who’ve had mastectomies. They’ve been through it themselves and wish there was a better way. I wish there was a better way too. Surgery sucks. It’s painful. It’s expensive. It’s inconvenient. But buying unnecessary, overpriced products that you’ll use once or twice is not going to make the situation any better or make you more comfortable. It’s just going to make you poorer and leave you with a bunch of useless stuff once you’ve recovered.

Well intentioned or not, these products sell by preying on the fears of vulnerable women facing surgery. It’s capitalism, baby: there’s lots of money to be made off of BRCA+ women and women with cancer. Cancer consumerism–you don’t need it.

 

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

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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.

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.

Psychological Recovery from Prophylactic Mastectomy

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I generally don’t talk about my personal life here. There are a lot of BRCA+ blogs that deal with the personal experiences of individual women, and I want the risky body to do something different. Still, I have benefited so much from the personal stories BRCA+ women have posted online about their surgeries that I feel compelled to pay it forward by talking about my own recent prophylactic mastectomy.

I am recovering from the mastectomy and from the first stage of DIEP FLAP reconstruction. After my revision surgery this winter, I will post a detailed account of my entire mastectomy “journey” (a word I hate, but that’s another post). I’ve started drafting that comprehensive post. It is already absurdly long and probably completely TMI, because when I was trying to plan my own PBM and reconstruction, I was desperate for any information about either procedure that I could get my hands on. I hope that it will help someone out there who is anxiously considering, planning, or waiting for her own surgery. But for the moment, I want to talk about how I’m feeling right now, three weeks out of surgery.

I’ve read a lot of accounts of mastectomy experiences by BRCA+ women and BRCA- women with breast cancer. Many of them talk about post-surgery depression. Even the packet of information my plastic surgeon gave me warned that many women experience depression after surgery, it’s normal, and it usually passes in a few weeks (I’m not so sure that it passes so quickly, or ever for that matter, but whatever).

I didn’t know how I’d react after the surgery. I’ve had two years to get used to the idea of mastectomy and while I was 100% certain that it was the best choice for me, it’s hard to predict how you’ll feel when you actually following through with having supposedly “healthy” body parts removed. I was ready for the post-surgical blues and warned my partner to expect it.

But I did not get depressed after surgery. I do not feel a sense of loss. Quite the opposite. Rather than mourning the amputation of my breasts, I immediately felt like the newly transplanted DIEP FLAPs are my breasts–not “foobs”, “noobs”, “fake boobs”, or any of the other euphemisms that get bandied about in the BRCA+ community. When I peer down the collar of my shirt, my cleavage looks the same as it always has: you can’t even tell I’ve had a mastectomy. My new breasts are not perfect, not by a long shot, but I look like me. Even better, I feel like my old self–the self I was before I got my deleterious test results: the woman who didn’t live in constant fear of cancer.

More than feeling relieved to have lowered my risk of breast cancer dramatically and relieved to not have awoken from surgery with bride-of-Frankenstein breasts, I feel buoyant, happy, and free. As a natural-born cynic and self-declared feminist killjoy, these are not words I use lightly, but it’s true: since my surgery I have been uncharacteristically joyful.

For instance, my Facebook status updates are usually filled with sardonic quips, workplace in-jokes, cat pics, and political snark–I don’t post about my personal life much there either. But check out my first post-surgery Facebook status update:

“I knew I would feel relieved, but I could not have predicted how happy I’d be. I haven’t been this happy in two years. It could be the percocet talking, but I think it’s the fact that I kicked founders effect’s ass. Family curse, broken, boom, joy. [/earnest facebooking]”

In the weeks after surgery, I started crying tears of happiness when people would do kind acts for me. I realized that I am part of several different communities that care for me and want to help me in my recovery. Sometimes you don’t realize you have people until you really, really need them.

Part of this emotional high may have something to do with the heavy duty drugs I’ve been on. Part of it is probably hormone fluctuations from losing estrogen-producing breast fat during the mastectomy. But a big part of it is that after getting my BRCA+ test results two years ago, I have lived under a black cloud waiting for lightning to strike. I have been angry, confused, terrified, and sad–sometimes all at once. Now, I’m not. My breast surgeon estimates my current breast cancer risk is 2%. I feel liberated.

BRCA+ women have much in common, but everyone reacts to mastectomy in their own way. If you are planning a PBM with or without reconstruction, I wish I could say that you will feel this kind of jubilance after your surgery. I wish I could guarantee every woman facing mastectomy that they will have this kind of positive experience. I can’t.

But I can say this: deciding to have a prophylactic mastectomy, planning it, consulting and choosing doctors, deciding on reconstruction, scheduling the surgery date, and waiting for that day to come–these things were far, far worse than the surgery itself and the recovery I’m currently experiencing. The waiting really was the hardest part.

tom petty

[This meme is misleading, because I almost always agree with Tom Petty]

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.

 

HBOC Threat Level Orange

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I may or may not have ovarian cancer. I’ve had a host of “whispering symptoms” for a while now that three different general practitioners have repeated misdiagnosed. Each time I reminded them that I was BRCA+ and asked if I should be screened for ovarian cancer. They waved it off. As is typical with ovarian cancer, these symptoms could very well turn out to be something else entirely. My doctors are rushing me into extra screening this week.

The timing is ironic. My usual twice annual screening was coming up soon anyway, so I already had appointments for a CA-125 test, ultrasound, and physical exam that have now been urgently condensed and sped up. I’m also preparing for my prophylactic mastectomy surgery later in the year. So the same day my doctor sits me down with a grim face to say it may be ovarian cancer, a bunch of supplies I ordered from Amazon appeared on my doorstep–shower chair, bed tray, wedge pillow, etc.

It’s a funny thing to be preparing for a surgery you may not be able to have because of more pressing medical issues. Part of me is mentally putting the mastectomy surgery on hold until I have answers about these symptoms. Part of me thinks the symptoms will turn out to be much ado about nothing and I should carry on with mastectomy plans. It’s hard to know what to do or how to occupy myself while I wait for answers.

I’ve been joking that this ovarian cancer scare has put my family and I on threat level orange, like the Homeland Security alerts. Hopefully, it will all turn out to be a false alarm. But one of the many frustrating things about having a BRCA mutation is that, in a way, you are always at threat level orange, not unlike Homeland Security terror levels after 9-11. If/when I’m told that I have “no detectable cancer” (which is as much as a high risk girl can possibly hope for), I’ll still be looking at decades of false alarms. Even if I have a prophylactic mastectomy with oopherectomy, salpingectomy, and hysterectomy, I will still be predisposed to other cancers. The best case scenario is a life of fear and threats with no actual diagnosis–a life of threat level orange.

This threat level system is really more my style

The Neave Sisters

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I recently purchased Veronica Neave’s Pieces of Me, a documentary companion film  to her autobiography about her family’s experiences with BRCA2. Unfortunately, the DVD is coded for a different region and won’t work on my American DVD player (digression: DVD regions are a total scam). I found part of the film on YouTube, so you can watch about a segment in which the BRCA+ sisters grapple with how to manage their risk. At one point in the film, Veronica Neave says “knowledge is a gift–or so I thought” and notes how difficult it is to figure out to what to do with the knowledge of being BRCA+ when the options for managing high risk are so “barbaric.” I couldn’t agree more.

I am really disappointed that I can’t watched the entire movie, because Veronica Neave and her sisters Chrissy Keepence and Elisha Neave have such an amazing rapport and they instantly won me over (incidentally, Chrissy is wicked stylish). But in my quest to find the film online, I fell down a YouTube rabbit hole. It turns out that the Neave sisters often appear in the Australian media to discuss BRCA+ issues. You can find a really great interview with them here and here that was filmed some time after Angelina Jolie announced her mastectomy.

The interview reveals that Neave’s mother Claudette is fighting a recurrence of breast cancer, her youngest sister Elisha (who in the film put off prophylactic surgery because she felt that she had more time) was diagnosed with ovarian cancer at 33, and her father has also recently passed away. This is what it’s like to be in a cancer family: there is no reprieve.

The account of Elisha’s experiences with ovarian cancer is particularly gut wrenching (follow up on her here and here). It seems noteworthy that in the two BRCA1/2 documentaries that have been made–Pieces of Me and Joanna Rudnick’s In the Family–women in their 30s delayed prophylactic surgery and then faced cancer diagnoses a few years latter (in Elisha’s case ovarian cancer and in Rudnick’s case breast cancer). Mastectomy and oopherectomy are obviously very difficult, very personal decisions and not everyone chooses to go those routes. However, these films suggest that if you have chosen surgical risk reduction, then you should act sooner rather than later at the same time that they show that actually following through with surgery can be easier said than done.

Adding to the complexity of this issue is the fact that prophylactic mastectomy is considered “elective surgery” in Australia and not covered by the healthcare system there. This situation puts an appalling financial burden on BRCA+ Australian women to pay for their own risk-reducing surgeries if they can. In worst case scenarios, it makes risk-reducing surgery unavailable to those who can’t afford it.

UPDATE: I just discovered that you can rent the entire film on Amazon. Woot!