Thoughts on Privacy

I've been thinking a lot lately about privacy. And I know I'm not alone. Unless you've been living under a rock -- or just quietly going about your life offline -- you've undoubtedly read about the dust-up created by our robot overlords, er, ahem, I mean Facebook, and their new opt-out-only privacy settings and the cash they're printing selling our personal data -- the things we like and don't like -- to companies who in turn target us with personalized advertisements. The problem with Facebook, so far as I see it, is that we all flocked to it -- after we abandoned the rusting amusement parks of Friendster and MySpace -- because we thought it was a place to share photos and catch up with old friends; we gave freely of our personal data -- joined groups, supported causes, etc -- because we were told our profiles would be protected. But the reality is much more complicated; now our profiles are being commodified and, most troublingly for me, much of our data is now Google-able.

I Googled myself today, and I discovered, much to my horror, a wall post I'd written on a group I belong to on Facebook, which contained a link to this blog, was the second result that appeared when I typed in my name. Now, I'm not so vain as to think that every day, dozens of ex-boyfriends, frenemies, potential employers, and secret admirers, etc are typing my very-hard-to-spell last name into Google and reading through the results. But I'm also not naive enough to think that people don't Google me, especially potential students, editors for whom I freelance, and, yes, potential future employers. And though I am proud of this blog and proud of the decision I made to take control of my health, I do not want the fact I had a double mastectomy and am a breast cancer gene carrier to be the second thing you see when you Google me. Yes, being a BRCA mutant and a card carrying member of the double mastectomy ladies luncheon society is part of who I am; but it's not what I want to define me.

When I saw the search results, I broke out in a cold sweat. I felt outted. I felt naked. And the worst part -- I feel powerless. There's no one to write to to say, "Kind sir, please delete this search result. I'd rather people not know about my boobs." I'm not sure when this happened. I googled myself a few weeks ago and nothing of the sort showed up. So I changed my settings, left a few groups, and well... I can't do much else.

Which leads me to larger, icky, existential questions about how to live in an era of oversharing, still maintain this blog (because I truly believe if I can help just one woman feel less alone and less scared, I've done something right), and preserve a modicum of my privacy. I realize it's a slippery slope; if I was truly interested in privacy, I would never have penned this blog or dreamed of telling my story more publicly. But I did those things on my terms; Facebook outted me on theirs. I'm feeling exposed and vulnerable and, regrettably, let down.

The truth is, the public at large is misinformed about BRCA mutants. As I wrote about in my last post, people can be unkind, judgmental, and, frankly, totally wackadoo in their perceptions and prescriptions. Because I'm not a breast cancer survivor, for whatever reason, my choice to prevent cancer by surgically removing the parts of my body most likely to try to kill me is deemed controversial by some, over-dramatic by others, and, at the very least, questionable by many. And I hate that this information about me -- this choice I made, this journey I've traveled, this genetic imperfection I have -- is now accessible to people who may judge me because of it. I've always thought of this blog as a place to update my friends and family as well as a place to connect to complete strangers; I've never intended this to be a destination for acquaintances, people I know but not well enough to tell them about all of this. And that's who that Google result make me accessible to: the people I don't really care to share this with.

When I first started writing here, I found myself questioning whether writing about my heath -- something so private that there are laws protecting the information I've giving away here for the world to see -- would end up harming me -- in terms of discrimination and judgment. I'd forgotten about that concern in the last few months; after all, I was reaching so many people, and telling my story was therapeutic for me. This blog, this forum, was not harming me at all; it was helping me, as well as others. But now I worry about my privacy again and wonder when the balance tips between help and harm.

Revolt against the brain-dead commenters

I guess I'm a glutton for punishment. Every time a news story is published about BRCA, I read it thoughtfully, take a deep breath, and then dive into the comments section -- a sinister, murky land filled with ill-informed trolls and their crazy talk. It both breaks my heart and makes me incalculably angry that strangers can be 1) completely insensitive to each other and 2) so thoroughly mistaken about the prescriptives they aver with such surety. The internet is full of cancer denialism, and this is my -- albeit small and meek -- revolt against it. Below, I've copied comments that illustrate my point; then I explain why they are wrong.

Comment: "Cancer is the non stop growth of cells, since they are trapped in the body they just grow in a 'ball shape'. It is believe that its trigger by high levels of stress. or negative feelings towards other people. Energy cannot be destroyed it only transforms, and sometimes transforms into bad things like cancer."

My response: This gem was left in response to an article posted this week about a mother and son, both BRCA2+, who battled breast cancer simultaneously. Though I'm tempted to tear apart the logic, and ridicule the grammar, I'll try to play nice. But this comment illustrates a sentiment that is very prevalent among internet trolls, and that is: IF YOU GET CANCER, IT'S YOUR FAULT. < Pause to compose myself > This is vile and reprehensible BULLSHIT. How can anyone say such a thing, let alone think it? If you have cancer, it's because you are stressed or have negative feelings towards other people. And if only you didn't have stress (who doesn't?) and negative feelings toward other people (oh, like the negative feelings I have towards you, internet commenter?), you wouldn't be sick. Where do people like this get off blaming the victim? Do they have any idea how wrong and insensitive this sentiment is? I'm guessing this commenter wishes to suggest being less stressed and harboring fewer negative feelings will prevent cancer, but that is not only wrongheaded, it's also easily misconstrued as a value judgment on those who already have cancer. And it's despicable.

Comment: "There is too much emphasis put on the BRCA2 gene. My mother had breast cancer, I had breast cancer, and my daughter has breast cancer. We were tested and it is not genetic. Cancer is just a disease that is becoming prevelant in today's society. Anyone, anytime can get it and they don't really know what triggers it. We need to find a cure now!!!!!!!!!!!!!!!!" (comment from the same article as above)

My response: Easy with the exclamation points, hoss. Nothing says take my well thought-out and rational response seriously than sixteen exclamation points. Sarcasm aside, I agree with this commenter that we need to find a cure now. But again, I think there is a major logical flaw in this commenter's argument (if we could be so kind as to elevate it to that level of discourse): my cancer wasn't hereditary, so therefore hereditary cancers aren't important. The truth is, there isn't nearly enough emphasis put on the BRCA gene. More education and outreach -- both in the general population and among medical professionals -- is needed; there is so much ignorance out there about hereditary cancer (not the least of which is the sentiment expressed by dumbass number one up there that cancer is caused by stress, not gene mutations) and more, not less, emphasis needs to be put on it. Secondly, this commenter is wrong that her cancer wasn't genetic; it was. All cancers are genetic. She claims her cancer is not hereditary, and that may indeed be the case. But then again, there could be other genetic mutations not yet discovered that could explain why three generations fell ill to the same diseases. Since hereditary cancers only account for 5-10% of all cancers, it clear something else -- and I'm guessing it's triggered by our environment, what we eat, and how we live -- is at work here. But to discount hereditary cancers because yours isn't is myopic and selfish.

Comment: "That could be a generational curse. They don't have to stop having children in their family, they just have to pray to break the generational curse. With man things are impossible, but with God nothing is impossible. Didn't you see now that they are both cured. God did that." (from the same article)

My response: I'm going to restrain myself here (which is very hard to do) and try to be evenhanded (and not get into a religious debate). But there are a number of things in this comment, especially, that gets my blood boiling. 1) "Generational curse": what the fuck does that mean? And who put it there? 2) "Pray to break the generational curse": um, please show me the evidence that prayer has ever repaired broken genetic code or cured a disease. 3) "They are both cured": did I miss the memo about the discovery of the cure for cancer AGAIN? Man, I'm always the last to hear about this stuff. < end sarcasm > They aren't cured. They have survived. Their disease is in remission, not gone for good. THERE IS NO CURE FOR CANCER. Why do we forget this? 4) "God did that": no, he didn't. Chemo did that. Radiation did that. Surgery did that. Lynda, the mom, did that. Cedric, the son, did that. The doctors who treated them did that. Please give credit to the people who took the actions that lead to the results. I'm stick of strange forces being blamed for causing cancer and sick of strange forces being credited for curing it. No. They took the initiative, they took control. Recognize and respect.

Comment: "Hmm. Profound. My father and grandfather died of kidney cancer, one uncle from brain cancer and another from bone cancer. My grandmother and two great aunts died from alzheimers. My maternal grandfather and his father died of heart disease. Maybe I should have my kidneys, brain, heart and bones removed so I can be sure I will live a very long life. Young miss, look out when you cross the street."

My response: This insensitive dreck was left in response to the amazing Lizzie Stark's Daily Beast essay about her preventative double mastectomy. I almost have nothing to say, since the stupidity of this fecal morsel speaks for itself. But I will say this: The commenter comparing apples to oranges; both Lizzie and I can live happy, productive, and peaceful lives without our breasts, whereas none of us can live without kidneys, brains, heart, and bones (although I'm dubious this guy hasn't already has his brain removed). To compare them (while also conflating the statistical risk of hereditary breast cancer with whatever risk of hereditary heart disease, kidney failure, bone cancer, and Alzheimer) is illogical.

Comment: "This young woman chose to mutilate herself. That was her decision. I personally would never consider such a radical approach. That's me. I would like to think I'm not so afraid of the inevitable - death - that I would start chopping off body parts or quit leaving the house. That's me." (again in response to Lizzie)

My response: First of all, Lizzie did not mutilate herself. Second of all, she never said anything about fearing death (or being an agoraphobe... not sure where that came from). But that's not what bothers me about this comment, or others like it. It's that these people seem to be saying, "Suck it up and get cancer." It's like they are saying, "Sure, you have lots of options at your disposable to avoid it but you shouldn't avail yourself of any of those options." Why? "Because that's not what I would do." Well, I don't mean to speak for Lizzie, so I'll just speak for myself: I don't give a fuck what you would do. And furthermore, suggesting that we shouldn't prevent cancer (and just sit back and wait for it to come) is as deplorable as suggesting we caused our cancers.

< Deep breath > I think I need a drink. It's almost noon. That's cool right? (Oh, a little shout out to all my readers -- and commenters -- who leave thoughtful, conciliatory, and admirative comments: you guys rock. I'm so glad to have your support. Let's hope the trolls never infiltrate this blog!) < Raising a martini glass > To logic, empathy, and kindness.

Boobs in Paradise

I just got back from a trip to paradise (which explains why this blog has turned into a bit of an abandoned amusement park this month. Here's to cranking up the ol' carousel and calliope one more time). It was my first vacation since my surgery and, in many ways, it was a celebration of a return to normalcy, to health, to happiness. I left G at home this time and set sail with my dear friend N (whose loyalty and companionship I've extolled several times on this blog) for a girls getaway to Aruba. It was a trip designed to commemorate many of my new boobs' firsts: first time on a plane, first time out of the country, first time in a bikini, first time in the ocean. And it was a incredible success: we had restorative, sun-soaked, and booze-filled fun while picking apart (in the way only girls can) the minutiae of life and love. But there is nothing like wearing a bathing suit for a week to put you back in touch with your body. Here are some things I learned about my boobs on vacation:

1) They like to make surprise appearances
I was emailing with another recently reboobed BRCA babe this week (the incredible Lizzie Stark, whose piece in the Daily Beast last week, "Goodbye to My Breasts," engendered comments both clueless and congratulatory) who mentioned her new boobs seem smaller because, as she put it, "the shape of the implant gives me a lot of boob above the nipple." I have the exact opposite problem: my nips are positioned on the top third of implants so that they are always reverently pointing towards the sky. Still, after all these months, I am startled when I look down and see a nip seemingly near enough to poke me in the eye. Because of this, covering them in the bikini I wore, a sort of retro-bandeau halter, proved more difficult that I imagined. N was on constant nip patrol, ready to warn me when the shadow of my areola appeared above the horizon of my top. I gave up a few times, however, especially while snorkeling; I gave the rest of my diving group a free show on more than one occasion, I'm sure.

2) They won't pop while getting a massage
I got my first massage since surgery on the second day of vacation, and I was a little worried that my implants would get in the way/explode/cause my masseuse would run out of the seaside hut screaming in horror. I still have not returned to stomach sleeping yet, so the sensation of laying on my breasts like that on the massage table was odd at first, but I quickly forgot about it (most likely because I was being rubbed with oil and it felt oh so good). And my massuse didn't say a word about my breasts; I'm not even sure she noticed.

3) They don't behave any differently in the water than the old ones did
Much to my disappointment, they are not personal flotation devices. But much to my surprise, they don't feel much different than my old breasts. When G and I were in Costa Rica last summer, I remember floating in the warm Pacific and trying to imprint on my memory the sensation of what my body felt like at that moment, weightless, supported by the buoyant seawater. But what I discovered shortly after sprinting into the ocean about sixty minutes after touching down on the tarmac at Queen Beatrix International Airport is that, when you're floating, you feel nothing. It's like that weightlessness, that numbness that your feel through your entire body when you surrender to the waves, ensconces you. For a moment then, my boobs didn't feel different at all; they felt like the rest of my body, enveloped in warmth.

4) I'm not ready to go topless
Nudity is circumstantial. In the context of my BRCA life, I find myself taking my top off for just about anyone who asks, proudly showing off my new rack. But when it comes to just being nude, not as a woman who's had breast reconstruction but as just a woman, I have discovered I'm a little more shy. The beach where we sunned ourselves all week wasn't exactly topless, but the act tanning your ta-tas was not frowned upon. I fell asleep in the beach chair under the shade of the palapa one afternoon and woke to the sight of a woman laying not ten feet from me defiantly, proudly topless. Whoa, boobs, I though. Real ones. I haven't seen real boobs in ages. All the boobs I see are reconstructed, like mine. I thought about going topless all week, but I found I wasn't ready yet. You see, when I pop my top off for someone to see my new boobs, I'm reinforcing the idea that my breasts are abnormal, that they are something to be inspected and remarked upon, studied and analyzed. And I'm comfortable with that. They are still oddities to me, too, and because of that otherness, I feel comfortable treating them like specimens rather than parts of me. I don't feel normal yet, so the act of doing something natural, like lying topless on a beach, isn't something I can do yet. I was worried about my scars. I was worried about the stares from passing cabana boys. I was not ready for my breasts to just be my breasts. That's a work in progress. I'll get there eventually, and when I do, I'll return to that swath of white sand and say, "World, check these out." But I wasn't ready to that yet, and that's OK.

5) Everything I've been through is worth it if it means I get to go to beautiful places and live a long happy life
Nothing makes me happier than traveling. There is nothing like that first moment when you arrive at a new place and your eyes take in the scene, full of wonderment, knowing that you'll never see things again quite like you see them the first time. I want my life to be full of moments like that, where I go some place new and see new things and get so giddy inside I think I might cry. And that's, in a lot of ways, why I did what I did. Because I want to be healthy. Because I want to live a full life. And I want to see as much of this incredible world as I can. And I know that having significantly reduced my risk of developing breast cancer, I hope to have many years of health, travel, friendship, and awe. I feel so lucky, so incredibly lucky, to have chosen a life less burned by fear, and I plan to make the most of it.

Happy BRCAnniversary to me

It's usually hard to pinpoint precise moments when your life changes; change tends to happen gradually and is often recognized only after the fact. But on this day, exactly one year ago, my life changed completely. On this day, I learned I was BRCA2+.

But change is a slippery word. I didn't become BRCA2+ a year ago today; I simply became aware I was. I've been BRCA positive since I was born -- heck, even before, when I was just a pile of cells, including my father's copy of his imperfect thirteenth chromosome. But a year ago, I entered a doctor's consultation room a woman, so far as I knew, at average risk for breast cancer and left, about thirty minutes later, someone different, someone who could never unknow what she'd just learned.

For some women, the day they receive their positive BRCA results is just another day; it's just Thursday. They are able to shelve the information, table it for a later date. But my experience wasn't like that. Armed with statistics, numbers, and risk models, I sprang into action. I began planning -- and by planning, I mean accepting -- my mastectomy. From the day I learned I carried the mutation to the day I removed the tissues it was most likely to affect: 7 months, 9 days.

Looking back, after the year I've been through, I often think about that transformative moment. If I had to do it again, would I still do it? Should I have waited? Is ignorance bliss? There is never a good time to learn you carry the breast cancer gene, and it's information not every woman wants to know. But even though the information I learned a year ago today changed my life -- and my body -- I'm still glad I have it.

But in learning I carried the breast cancer gene, I became much more than a woman a high risk for breast cancer. For years I was a writer who never did any writing; a year ago I became a writer for real, not only with a subject but with a voice. And somewhere along the way, I acquired an audience; I now speak not only for (and to) myself but to the women I know read this, to the women who are finding themselves in the same position I found myself a year ago, to the women who might feel alone like I did. Becoming a previvor allowed me to fulfill another passion, and for that I'm grateful. For my audience, I'm humbled.

So much can change in a year. And for me, a lot has. I've got a new identity -- that of previvor, blogger, mastectomy graduate. But those changes have been overwhlemingly positive. I don't have the option of not having the mutation -- that would be fantasy -- so if I have to do this, if this is indeed my fate, I'm proud of how I've handled myself.

To those far along on their journeys or for those just beginning, we are members of a group not one of us would likely want to join, but we're bonded by our experience, our choices, and the tolls they exert on us. Life hasn't always been easy these last twelve months, but I also have a better appreciation for living. After all, I was given a choice to live life on my terms or my genes' terms, and I chose the path that would allow for the most health, the most joy, the most reward. And I have been rewarded: I'm happier than I've ever been and more certain than ever that we can create positive change. None of this would be possible without knowing what I learned a year ago today. Happy BRCAnniversary to me.

The OTHER Surveillance

Last week, I wrote a couple of posts about what it means to be a young women who has chosen to have a risk-reducing mastectomy and whether or not that makes me "pro-surgery." The conclusion, of course, is that, while I certainly feel that a PBM was the right choice for me, I support all women facing hereditary cancer, no matter how they chose to manage that risk.

But there are two sides to the BRCA coin.

Whereas I chose a preventative mastectomy to manage my breast cancer risk, I'm currently opting for ovarian surveillance. In other words, while it was relatively easy for me to say goodbye to boobs, I'm not yet ready to part with my other lady parts.

This is a factor of my age. At 31, I'm not done having kids yet. That's because at 31, I haven't even started having kids. And, looking at my calendar, unless I get an unexpected urge to reproduce, I'm giving myself a few more years of sleeping late, going out, and spending my disposable income on shoes and vacations and dinners out. In other words, I hope to be a DINK (dual-income, no kids) for a little while longer. But not forever. I think I want kids... (I've never been one of those girls who say, "All my life, all I ever wanted to be was a mom." Spending any time with a baby reminds me how grateful I am I don't have one). But I know, at least, I want the possibility of having them. So I'm going to need my ovaries some day. Just not today.

I plan to keep my ovaries at least until I turn 40. As a BRCA2 mutant, I'm "lucky" (lucky in quotes because ... pshaw ... no one should have to plan when they are going to pull out their ovaries) that I have a less astronomical risk of ovarian cancer (about 1 in 4 vs. 1 in 2 with my BRCA1 counterparts) and, therefore, a little more leeway with how long I can keep my ovaries. (When I was given my positive genetic test results, the doctor told me I should think about an oopherectomy at about 45. That seems to be pushing it a bit, but I'm glad I have the option to stall if I need to.)

To be honest, I'm TERRIFIED of removing my ovaries, far more than I was about removing my breasts. I know this is counter to what many women feel when they get their BRCA results -- for many, an ooph is a no-brainer, whereas the mastectomy is the toughie. (And studies support this. An oopherectomy increases survival rates in BRCA mutation carriers and lowers breast cancer risk, too.) But this is also a factor of age. I got my genetic test results when I was 30; if I was going to do something, it was going to be the mastectomy. (Incidentally, I've noticed a generational divide on this issue. Many young previvors like myself are eager to take some kind of action, and we don't feel as "attached" to our breasts -- especially once we begin to think of them as ticking time bombs -- so they are expendable. As Bright Pink founder Lindsay Avner told CNN in an interview last year, "I mean, after all, what difference does it make? It's just a boob.")

On the other hand, ovaries make a big difference. And their absence has lasting effects on your whole being, body and mind. Aside from instantly losing all the estrogen in your body (which can affect everything from libido to body weight), women in surgical menopause are more prone to cardiovascular disease. But most troubling to me, women who undergo oopherectomies are at elevated risk for memory loss, dementia, and, as this report kindly euphemizes, "cognitive decline." Let me be clear: THIS SCARES ME SO MUCH MORE THAN OVARIAN CANCER EVER COULD. My brain is my most prized possession. I take great care to exercise it. I need it to work, to teach, to write. I am in the midst of what I hope is a long and successful career in academic publishing, and you can't even imagine how heady my work is. If my brain turns to mush, I'm fucked. In other words, it's the side effects of the oopherectomy that have me scared, not the disease it's intended to prevent.

I've been thinking a lot about aging lately. I've been picking grays from the Susan Sontagian-sweep of my crown, I'm spending a small fortune on night creams designed to minimize my crows feet, and I'm slowly beginning to accept I'm not a kid any more (even if I still occasionally act like one). I think there is a lot to look forward to in life, and imagining getting old before my time (and not just physically) scares the crap out of me. Cognitive decline in my early forties does not jive with my definition of quality of life. (Incidentally, I plan to avail myself of any and all hormone replacement therapies. This might alleviate some of the side effects of menopause, but considering I feel like I just got my period, oh, last week, it's still hard to even imagine the M word in my near future.)

It's clear I have not accepted -- at least with the same grace I did my breasts -- that my ovaries will have to go. But I've got some time to get used to the idea.

In the meantime, even though there are no reliable methods of detecting ovarian cancer at an early stage, I'm doing increased surveillance. And I do so with the complete understanding that it's a bit of a charade. Last Wednesday, I saw my ladydoc, who is also a BRCA+ babe, and she wrote me a script for my twice-yearly transvaginal ultrasound and CA-125 blood analysis. These two tests are currently the only screening options available to women at high-risk for ovarian cancer, and they are pretty much medical hocus pocus. And elevated CA-125 score could indicate something amiss, or it could uncover routine fluctuations in your hormones. Ultrasounds only detect things big enough to see, which is usually when things are already in the shitter.

But, I play along. I like sleight of hand tricks. I like smoke and mirrors.

As I laid, legs splayed, feet in stirrups, and watched as my insides were projected on a high-definition television screen above my head, I wasn't scared; I was skeptical. What are those undulating masses on the screen? And how can anyone discern anything from that grainy picture? My doctor assured me my ovaries were "lovely." I just saw static on the screen, but, hey, if you say so. I had my blood drawn for the CA-125; again, I wasn't scared. I was resigned. Resigned to play along. Resigned to wait for something better. My score was a 7. I'm -- so far as any one knows -- in the clear.

So this is my life with my ovaries. An oopherectomy at 31 is not the right choice for me. It may be for someone else, and I support that decision, as long as it's been reached with an understanding of all its consequences. But I guess in the end, I'm not for or against anything. I'm just trying to find my way through this mess, just like everyone else.

You Don't Own Me Anymore, Myriad!

I know I've been blogging a lot recently, but there's been a lot of BRCA news to report on. Last night, a story equivalent to the Pitt-Aniston divorce rocked the genetics world, and I'd be remiss not to mention it today...

When I was tested for the BRCA mutation, and my results came back positive, I was not able to get a second opinion. That's because, in the U.S., only one company offers the test: Myriad Genetics, based in Salt Lake City. Myriad has patented the BRCA1 and BRCA2 genes, and these patents gave Myriad a monopoly on testing for deleterious mutations in these genes. In the absence of competition, the company charged $3000 for screening tests -- a expense that put this test far outside the reach of many men and women who could have benefited from the results.

But all that changed yesterday.

A federal court nullified Myriad's patents. Last May, the American Civil Liberties Union and the Public Patent Foundation filed suit against Myriad, charging their patent on the BRCA genes was unconstitutional. (I wrote about the lawsuit back in May 2009.) And yesterday, a federal judge agreed. The whole 152-page ruling can be found here, and here are links to analysis of the decision written by people with a more complete understanding of patent law, intellectual property, biology, and genomics than I have:

New York Times: Judge Invalidates Human Gene Patent

Wired: Judge Nullifies Gene Patents

NPR: Federal Judge Rules Against Patents On Human Genes

Newsweek: In Surprise Ruling, Court Declares Two Gene Patents Invalid

Los Angeles Times: Breast cancer genes can't be patented, federal court rules

I say this is the equivalent of an unexpected high-profile celebrity divorce in the BRCA world because this ruling -- if it stands, and it looks like it will be appealed -- will CHANGE EVERYTHING about the way men and women learn about their BRCA status. It is likely that the test will now become more widely available, which will drive the cost down. Which is, of course, a wonderful thing. But I wonder about the other not-so-beneficial consequences (and please don't accuse me of suffering from Stockholm Syndrome, in which I grow attached and sympathetic to my kidnapper). Will the quality of testing go down? And will the test be made available to people who don't need it? Myriad has already begun airing direct-to-consumer advertising in the selected regions; the spots use that tried-and-true formula common to many pharmaceutical ads -- "Ask your doctor if you are at risk for high blood pressure and see if Lipitor is right for you" -- and turn it on its head -- "Be ready against cancer." The problem is that this kind of advertising discourages genetic counseling, since the blood draw can be handled by your primary care physician. But genetic counseling is ESSENTIAL to anyone seeking to understand their genetic predisposition to disease; a Myriad-sponsored pep talk by your PCP will not prepare you for the impact of a positive result.

(In fact, true story: when I originally learned there was a genetic mutation in my family, I went to my PCP to discuss how to proceed. She basically brushed me off, said she didn't know much about it except that it was exceedingly rare, and that I shouldn't worry too much about it. Fast forward to December 2009. I'm in her office for presurgery testing. She tells me she thinks I'm brave and that I'm the only person in her practice to be a BRCA mutation carrier. But what do I spy on the shelf behand me as she swabs my nostrils for the MSRA screening? A stack of testing kits from Myriad. This woman who knew nothing about the BRCA gene is now offering to test for it. I shudder to think the damage receiving positive results from someone like her would inflict on a women at such a vulnerable moment.)

But perhaps I'm conflating two different problems. Perhaps quashing the Myriad monopoly will cause direct-to-consumer marketing to cease. And I'm certainly not saying Myriad should be able to patent our genes. I applaud the ruling. It's really an incredible breakthrough. But I'm not completely clear on what effect -- though I know it will be cataclysmic -- the judgment will have on the way Americans receive their genetic test results. And, of course, this case will change the way all genes -- not just those associated with breast and ovarian cancer -- are patented (and about 20% of genes have been patented). So this case is incredibly important. And it's definitely a step in the right direction. Hopefully this will open avenues for further research on the gene and spur advancement in treatment and prevention of hereditary cancers. I just hope we get all of the good without any of the bad.

Extra! Extra! Studies Suggest Surgery Not Always the Best Option, Young Boobless Woman Thinks She May Need to Lay Off the Studies

In my last post, in which I discussed new studies that show surveillance and surgery yield pretty much the same survival rates, I wrote, in reference to a trend piece in the NYT which reported more (non-BRCA) women are choosing bilateral mastectomies: "the benefits of bilateral mastectomy for us mutants are well documented." Well, a new study that's attracting a fair amount of attention this week suggests otherwise.

The headline over at MSNBC reads: "Losing breast little help after cancer." The article goes on to say:

Researchers said that in women with breast cancer who also have genetic mutations that make them more susceptible to the disease, women appear to live just as long whether they choose treatment that preserves their breast or have a breast removal, or mastectomy.

...

Dr. Lori Pierce, a professor of radiation oncology at the University of Michigan, and her colleagues observed 655 breast cancer patients in Australia, Israel, Spain and the United States, all of whom had genetic mutations that gave them a much higher chance of getting the disease. After 15 years, women who had a breast removed had about a 6 percent chance of a cancer relapse, compared with 24 percent of women who kept their breasts. If the latter group added chemotherapy, their risk dropped to about 12 percent.

But when it came to survival, there was almost no difference whether the cancer patients had decided to keep their breast or have it removed. Women who kept their breasts had a survival rate of 87 percent after 15 years, and women who had mastectomies had a survival rate of 89 percent.

The implication is that, even if 1 in 4 women who chose to conserve their breast (or 1 in 8 who chose chemo) experience a relapse, they don't die of it. So, all things considered, even in us mutants, a lumpectomy and chemo is as effective as mastectomy. Surgery, the research suggests, isn't always the best option.

This study arrives at an interesting moment. There has been fascinating discussion on several of the BRCA blogs I follow about our previvor community and its seemingly pro-surgery/anti-surveillance tilt. As the blogger who writes "The Secret Life of a BRCA1 Mutant" commented on my last post: "I really feel like the general public says that surgery is crazy, and the BRCA community says that surveillance is crazy, which puts women in a situation to be criticized whatever they do." And Dee, with her admirable wit and cynicism, wrote on her blog: "I firmly believe, and I will go on believing, that it isn't "crazy" or "irrational" to reject prophylactic surgery in favor of screening....[O]n a philosophical level, I don't want to get to a place where we, as a community of mutant previvors, as it were, accept prophylactic surgery as the "solution" to the BRCA conundrum. " (And this is coming from a woman who's a veteran of the ol' boob chop chop and the nether ladypart removal.) Today, Teri even pondered her pro-surgery stance in a thoughtful blog post: "It may seem to the casual observer that I’m pro-surgery, since I have had a preventative hysterectomy & oopherectomy and a preventative double mastectomy, since learning of my high ovarian and breast cancer risk. Does that make me anti-surveillance? In a way, yes, it does, FOR ME, for my own circumstances – based on my age, my viewpoints, where I stand in life, things I’ve learned about BRCA related cancer and my tendencies to over-think, over-analyze and worry constantly. Do I think increased surveillance is a viable option for other BRCA mutants? Yes I do."

All of this chatter in the blogosphere and the critical mass of studies has me wondering about my own position. Am I pro-surgery? I suppose, by nature of the fact that I've had it, I am. Am I anti-surveillance? Absolutely not. In fact, I admire women who are brave enough to go that route. Surveillance, in many ways, simply wasn't an option for me. I suffer from an anxiety disorder, and I couldn't subject myself a lifetime of quarterly testing and waiting and the crushing fear and panic that attend it. I think surveillance is a fantastic option for the right kind of person. I'm just not the right person.

Which leads me to why I started this blog. When I first learned there was a BRCA mutation in my family and my cousin, 26 at the time, had tested positive for it and was pursuing mastectomies, I thought she was nuts. Cut off your healthy breasts? You've got to be kidding me! Disfigure your body? No thank you! It turns out, six months later, I'd be in a position to make a similar choice. And when it came time to decide what to do -- when it was my body and my future -- her choice didn't seem so radical after all; in fact, it made a lot of sense. But when I began to consider surgery, my cousin M was the only person I knew going down that road. I didn't realize there were support organizations. I didn't know there'd been books written. I felt pretty alone. But I also knew I could be an example. So I started writing here, and I chose to write about surgery because that was my choice, and I hoped my journey and experience could bring solace to others in my position. I've been honest all the way through: I've written about my ambivalence, my fear, my lows, and my highs. But my journey is whole (though still not complete ... I still have a few more years with my overalls before they get the yank) and this blog represents my experience with testing, getting my results, dabbling in surveillance, choosing surgery, having surgery, recovering from surgery, and thriving after surgery. So is this a pro-surgery blog? No. This blog is my story, and I chose surgery. But if I'm not pro-surgery, I'm simply anti-being scared of it. I'd like not to encourage surgery so much as assure you that if that's the road you chose, it's not as bad as you think. If I'm the worst case scenario (a fake-boobed 31 year old), I'm doing OK. And I think that's something that needs to be said. Yes our choices are shitty. Yes surgery is serious. But, if you choose surgery, it doesn't have to be a dark moment; it can be a positive experience.

Surgery isn't the only answer, and research is making the compelling case that there are other equally "good" options (good is in quotation marks because we're talking cancer and treatment here, so none of this is actually good). Sure, some of these studies make me pause and wonder if I've made the right choice. But that's part of the journey, too. Just because I have pretty round fake boobs doesn't mean I wouldn't rather have my old ones back. And I'll probably always miss them and wish there was some way for me to have kept them. But, for me, there wasn't an option. And so I write what I know -- and I hope I don't put any one off who's considering surveillance. I just write the blog I wish I could have read when I first embarked on this expedition into terra incognita. My greatest hope is that my experience can be someone else's map.