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.

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BRCAnomics Deja Vu

Great news, y’all, my BRCAnomics problems with my insurance company refusing to pay my breast surgeon have been fixed!

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PFFFT! Just kidding! That will never ever happen!

A few months ago, an insurance company representative told me that the issue was being fixed and that the claim should be covered. I didn’t actually believe her. After all, I’ve been through this too many times in the last year to trust anything an insurance representative tells me. So I wasn’t surprised to receive my “revised” bill for $4,336.80. Granted, it’s an improvement over the $6,672 bills that I’ve been receiving for the last year, but it’s still a far cry from what it ought to be. It’s a good thing I can’t set things on fire with my brain.

Insurance ought to be covering 90% of in network claims and they have for every other aspect of the mastectomy and reconstruction. Hospitals, the plastic surgeon, labs, etc. have all been paid. Apparently, though, Anthem BCBS hates my breast surgeon. Or maybe they just hate me. Or maybe they’re just really bad at math.

I mean, I’m not an accountant or anything, but my insurance policy states that I owe 10% for in-network claims. Last time I checked 10% of $6,672–AKA the amount I should actually owe–is $667.20. That’s capitalism for you: the math never seems to add up.

It’s been about a year since my surgery and here I am again, on the phone with billing offices. Literally. Hours of muzak, speaker phone, friendly representatives, the usual. I’ve spoken to four different women in four different offices this afternoon all of whom gave me different explanations for “why” this wasn’t covered. Really, though, they don’t know why it wasn’t covered, because they all say it ought to have been covered.

I don’t know what lesson to draw from all this. I did everything I was supposed to do. I researched surgeons and hospitals that were in my network. I called the insurance company multiple times to check on coverage. I spoke extensively with the finance people at the offices of the surgeons I chose. I made sure that the mastectomy and reconstruction were pre-authorized by my insurance company before I underwent surgery. There’s nothing more that I could’ve done.

But it’s a trap, isn’t it? Insurance companies routinely reject legitimate claims that ought to be covered. It’s a matter of stamina. They know many people don’t have the energy, financial literacy, time, or other resources to contest these nonsensical rejections. They save money by purposely fucking with the mental health and finances of patients.

The more bullshit they throw at me, the more stubborn I’m getting. I don’t care how many phone calls and representatives and years it takes: I’m not paying more than 10%. Ain’t happening.

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.

 

You are not required to be pretty

pretty

[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.

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.

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[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.

 

Protecting Women’s Agency: on prophylactic surgery for non-BRCA+ patients

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Peggy Orenstein has a really interesting opinion piece in today’s NYT on bilateral mastectomy for non-BRCA+ women, AKA “CPM.” For women without genetic predispositions to breast cancer, bilateral mastectomy does not prevent the recurrence of breast cancer nor does it lead to higher survival rates for patients. Orenstein cautions that women need to pay closer attention to the facts about recurrence and CPM when they’re making treatment choices in the wake of a breast cancer diagnosis. She’s totally right about that.

This is where she loses me, however:

“Treatment decisions are ultimately up to the individual. But physicians can frame options and educate patients in a way that incorporates psychology as well as statistics. Beyond that, doctors are not obliged to provide treatment that is not truly necessary.” (emphasis added)

The medical industry in general and the cancer industry in particular are set up to create passive patients who do as they’re told. This is doubly true for women, whose psychological and physical needs are often downplayed or outright dismissed by paternalistic physicians. Women who have just been diagnosed with breast cancer already feel confused, powerless, and betrayed by their own bodies. Do we really want to add to this psychological morass by encouraging doctors to deny CPMs to women newly diagnosed with breast cancer? I think not.

The situation reminds me of the days before BRCA testing when some women with significant family histories of breast cancer sought out prophylactic mastectomies only to be repeatedly denied the surgery. Even now, I hear stories of BRCA+ women being denied salpingectomies or other procedures by their doctors and insurance companies. It’s hard enough to make the decision to have preventive surgery without also having to deal with (primarily male) surgeons denying you the procedure you’ve chosen.

Now, Orenstein is writing about women who are not BRCA+ and the circumstances for average women with breast cancer are significantly different than the circumstances for BRCA+ women with breast cancer. For instance, CPM has been proven to extend the lives of BRCA+ women (whereas, to be clear, it’s been proven that it does not extend the lives of average women).

Still, we don’t always know if women have or do not have genetic predispositions to breast cancer. Breast cancer genetics go beyond BRCA1 and BRCA2, and women may carry undiscovered or little-studied genes that give them predispositions. I have a friend who tested negative for BRCA mutations, but every single adult woman in her family has had breast cancer. After carefully weighing her options, she chose CPM. Given her circumstances, that seems like a very wise choice to me.

Orenstein is right that women without BRCA mutations are having a lot of unnecessary surgery that generates its own risks. I’m sympathetic with her desire to inform average women with breast cancer and encourage them to make medically sound choices. I too would like to see fewer unnecessary mastectomies performed on average women. But if that change is going to come, let it come from women themselves and not from a paternalistic medical industry refusing to provide women with the healthcare they so desperately want.

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Pelvic exams are pointless, like everything else.

Lisa SimpsonThree things we already knew:

1. Ovarian cancer screening doesn’t work. CA-125 tests and transvaginal ultrasounds rarely detect cancer before stage IV. In fact, at the Joining Forces conference, Dr. Noah Kauff showed a disturbing slide demonstrating women who are screened for ovarian cancer actually have higher mortality rates than women who are not screened. (Seriously, that slide was horrifying)

2. Self-breast exams don’t work. They do not detect cancer early, because by the time a tumor is palpable it has already been growing for many years. Women who do self-breast exams regularly do not have better survival rates than women who don’t do them, but they do have more biopsies, mammograms, MRIs, doctors appointments, false alarms, and anxiety.

3. Mammography doesn’t work, at least for women under the age of 50. It doesn’t detect cancer early as promised, even if you buy into the myth of early detection (which you shouldn’t). In fact, breast cancers typically grow 6-8 years before they’re detected by a mammogram. Younger women–that is, premenopausal women–have more dense breast tissue that hides tumors on mammography film. And again, it has repeatedly been shown that mammograms do not save lives, but they do lead to more biopsies, false alarms, and over-diagnosis of DCIS.

Now here’s a fun new fact: pelvic exams don’t work either.

Recently, the American College of Physicians (ACP) put out new guidelines that recommended “against performing screening pelvic examination in asymptomatic, nonpregnant, adult women”:

“Pelvic examination is commonly used in asymptomatic, nonpregnant, adult women to screen for pathology. Evidence shows that the diagnostic accuracy of pelvic examination for detecting ovarian cancer or bacterial vaginosis is low. The PLCO trial and cohort studies suggest that the screening pelvic examination rarely detects noncervical cancer or other treatable conditions and was not associated with improved health outcomes. The PLCO trial found no reduction of ovarian cancer mortality rates by screening with pelvic examination or by screening with CA-125 or transvaginal ultrasonography, both of which are more sensitive for detecting ovarian cancer than the pelvic examination itself. Thus, there is indirect evidence that pelvic examination (as distinct from cervical cancer screening) in asymptomatic, adult women does not reduce morbidity or mortality rates. No studies were identified that addressed the diagnostic accuracy of the pelvic examination for other gynecologic conditions, such as asymptomatic pelvic inflammatory disease, benign conditions, or gynecologic cancer other than cervical or ovarian cancer. Many false-positive findings are associated with pelvic examination, with attendant psychological and physical harms, as well as harms associated with the examination itself. Harms of pelvic examination include unnecessary laparoscopies or laparotomies, fear, anxiety, embarrassment, pain, and discomfort. Women with a history of sexual violence, and particularly those with PTSD, may experience more pain, discomfort, fear, anxiety, or embarrassment during pelvic examination.”

Pelvic exams do more harm than good. They lead to false positives. They traumatize women who are survivors of sexual violence, as 1 in 5 American women are and 1 in 4 female college students are. They’re humiliating and sometimes painful. Women who fear or dislike them (and who doesn’t dislike them?) may avoid going to the doctor to avoid a pelvic exam. Most importantly, pelvic exams do a poor job of detecting gynecological diseases and do not lead to lower mortality rates from gynecological cancers. In short, pelvic exams are a waste of time, money, and emotional energy.

I’ve already seen some women express disapproval of the new ACP recommendations, just as many women expressed disapproval over the new guidelines that came out a few years ago that recommended against mammograms for women under the age of 50. It seems many women are accustomed to certain protocols and find them reassuring. But women’s healthcare should not be based on supplying false reassurance.

Some women, like Amy Robach in this interview, vehemently argue that a mammogram, self-breast exam, or pelvic exam found their cancer and saved their lives, despite scientific evidence that shows otherwise. So let’s be perfectly clear. Mammograms, self-breast exams, and pelvic exams do detect some cancers. However, detecting cancer and improving survival rates are not the same thing. So yes, an individual woman’s cancer may be found by these methods, but that doesn’t mean her odds of survival are any better than a woman whose cancer was detected later or by other methods.

[Warning: historical digression ahead. I have a point, I swear.]

In the early-to-mid-twentieth century, women who found suspicious lumps in their breasts were anesthetized for biopsies. If cancer was found, doctors immediately performed Halsted mastectomies without waking up their patients from anesthesia. In other words, women were not consulted about whether or not their bodies were going to be brutally disfigured when their breast cancer was treated–can you imagine what that must have been like?

In case you need a reminder of what Halsted mastectomies did to women’s bodies:

RadicalMastectomy

All this, despite decades of scientific evidence conclusively demonstrating that Halsted mastectomies were utterly unnecessary for the treatment of breast cancer and that women who underwent Halsted mastectomies actually had lower survival rates than women who had simple mastectomies or breast-conserving lumpectomies.

Why did doctors keep performing Halsted  mastectomies despite conclusive evidence that they were unnecessary and ineffectual? Because physicians simply preferred doing immediate Halsteds, no matter how detrimental they were to patient health and well being. Doctors believed, despite incontrovertible research otherwise, that radical surgeries saved lives–just as many women believe, despite incontrovertible research otherwise, that mammograms save lives.

In the 1970s and 1980s, feminist health activists fought long and hard to get surgeons and oncologists to base clinical decisions for female patients on well-designed scientific studies and randomized clinical trials. Breast cancer activist Rose Kushner spent hours in medical libraries exhaustively reading medical journals after she found a lump in her breast and devoted the rest of her life to scientifically driven women’s healthcare. And yes, Kushner was a feminist. (Check out Barron H. Lerner’s Breast Cancer Wars for more on this topic)

Ok, so here’s why I have indulged in this historical digression on immediate Halsted mastectomies and feminist activism:

It drives me absolutely crazy to see some women in the BRCA+ community dismissing overwhelming scientific evidence in favor of personal anecdotes. Activists like Kushner spent their lives fighting for women’s healthcare to be based on reputable research studies, rather than the personal preferences of male physicians and the patriarchal medical industry. This shift took decades. It was hard won. It improved the lives of countless breast cancer patients and their families. Show some respect.

The ACP recommendations against pelvic exams are based on 70 years of medical research, not anecdotes. Instead of denying the evidence that ovarian cancer screening, mammograms, self-breast exams, and pelvic exams are a waste of time, BRCA+women should be furious. After all, we’re subjected to ineffectual and scientifically unproven screening methods far more than average women. This puts us in an untenable position. We are at high risk for breast and ovarian cancer. We need to be screened for it often. Current screening methods for breast and ovarian cancer are lousy. What are we supposed to do?

I am so fucking sick of this shit–the constant appointments, the long waits, the anxiety, the endless copays, and the fights with insurance to make them pay for humiliating exams and testing. Cancer screening disrupts my life for months on end multiple times a year, and it pisses me off to find out it’s deeply flawed, if not downright ineffectual. I’m not a physician or a scientist. I don’t know what should take the place of antiquated screening methods, but I can read and interpret scientific studies. I understand when my time, money, and emotional labor is being wasted on bullshit protocols.

We need better screening for women’s cancers. If breast cancer history is any indication, then the first step to getting better healthcare for BRCA+ women is accepting that old methods don’t work and demanding better.