Wednesday, October 21, 2009

The tale of two women


There were two important articles published this week on the subject of being BRCA+, and they represent two different poles on the spectrum of prevention and illness.

Lizzie Stark published "I’m 27 and about to have a double mastectomy" on the Today Show section of msnbc.com. As the title suggests, the essay details Lizzie's choice to have preventative surgery to avoid getting breast cancer. Lizzie is BRCA1+ and watched her mother, who first got sick when Lizzie was just 18 months old, struggle with the disease her whole life. Needless to say, anyone who has read any word I've written in this space in the last six months would recognize that not only do I wholeheartedly support Lizzie's very public declaration of her intent but see in her story many echoes of my own.

In Newsweek, Sara Sussman published "I’m 35, With Stage IV Breast Cancer." As the title suggests, the essay details the long history of missed diagnoses that has doomed Sara to a life of incurable breast cancer. Sara is also positive for the BRCA gene, but she didn't know this until she was finally diagnosed with cancer after years of trips to the doctor complaining of chest pain. The tacit implication here, of course, is that if she knew her BRCA status, not only would no doctors have told her she was too young to have breast cancer, but she wouldn't have been at stage IV by the time they found it.

The two essays represent the wide spectrum of experience of BRCA+ women, and both affected me very deeply. In Lizzie's essay, I saw myself. In Sara's, I saw my worst nightmare.

But what is really interesting (and frustrating and infuriating and bothersome yet wholly expected and inevitable) is the reactions the pieces have garnered. Sara's piece has but one comment, from a sympathetic reader who wishes the author the best in overcoming her illness. Lizzie's piece, on the other hand, has, at last count, 158 comments, most of them overwhelmingly negative (not to mention ignorant). Now, even though I've publicly declared my distaste for engaging with the naysayers, I read every single one of those 158 comments (and refrained from responding because I'm doing that here) because in so many ways Lizzie's choice is my choice and those reactions to Lizzie are reactions to me, too. None of those hateful comments inspired in me a change of heart, of course, and I'm guessing they haven't swayed Lizzie either (be strong, girlfriend). What these comments do reveal is a vast misunderstanding of the nature of hereditary cancers, a general queasiness about elective surgeries, a conspiratorial distrust of the insurance/medical communities, and a bone deep intolerance for other people's choices. I was nearly in tears reading some of the commenters' hurtful words -- many of which concerned Lizzie's decision to have a family one day, despite the fact that she may pass the gene along to her future son or daughter -- because those cruel and unenlightened criticisms are aimed at any young woman who makes the same brave choice as Lizzie. In other words, those people were spitting their vitriol at me, too.

Now, I know the web is full of crazies, and one needn't look further than the dozens of comments recommending unproven and dangerous alternative "cures" for cancer to realize we're not even starting on the same page here, let alone the same book. But the fringe is not my concern. It's the average person who writes things like "I hope her insurance isn't paying for this!! This should have to be paid privately, just like any cosmetic surgery!" Or the 20-year-survivor who thinks Lizzie can avoid cancer by eating healthfully and avoiding caffeine. Or the commenters who think breast cancer affects only American women because of the way we live. Or the person who suggest Lizzie is making "every one around you suffer with you when there's a good chance nothing may happen."

(I'm going to stop there because I feel the rage brewing and the tears forming.)

These comments display a radically intolerant/occasionally completely uneducated understanding of the issues facing BRCA+ women, and for better or for worse, are exactly the kinds of reactions Lizzie or I or anyone in our situations are bound to encounter at some point in our lives.

But all of this is so much more disturbing when considered along with Sara's essay and Sara's story. I mean, what if Lizzie took the advice of the hateful commenters, decided to forgo preventative surgery, and wound up like Sara, with metastatic breast cancer at age 35? What would those commenters say then? I'm guessing, from the lack of controversial responses to Sara's essay, nothing. Lizzie and Sara are bookends on the continuum of BRCA+ women. And for some reason, Lizzie can be condescended to, reprimanded, and called crazy, while Sara only elicits our quiet sympathy. I said I'm not going to engage the angry mob, but I will say this: it's not fair.

Lizzie and Sara and I are all the same woman. We're just at different places in our journey. Their pain is my pain. And no one deserves to be treated like that.

8 comments:

  1. You know...ignorance is really no excuse for cruelty -- or insensitivity for that matter. Even if I thought such a decision was drastic (and I soooo don't) I can't fathom being a jerk about trying to convince someone of my opinion. What's the point of that?

    It sounds like these people were more than just ignorant...they were plain old mean.

    But putting that aside....I am curious about how genetic mutations do work in the case of BRCA. Like, I happen to carry two genetic mutations for blood clotting, known collectively as thrombophilia. I have never had a clot though. It is believed that for whatever reason it is possible these genes aren't expressed in my body even tho I am a carrier (believed, but not guaranteed).

    It is my understanding that when it comes to genetics, generally speaking, we might be able to influence whether or not genes are expressed by lifestyle choices...you know, diet, etc. Yet all the BRCA gals I've ever come across don't seem to discuss that much...causing me to surmise it's not effective in the case of BRCA. Is this because the over all lifetime risk of getting breast cancer is such a high percentage that making any lifestyle choices would be a proverbial drop in the bucket in terms of potential effect?

    I would LOVE it if you could do a post sometime about that (or have you already and did I miss it?) -- again, I don't doubt the choice you have made (wouldn't be my place to anyway)...I have cancer and would have loved to prevent it if I could have.

    PS: I linked to your blog in a recent post on mine :)

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  2. I found you over at Kayleighs, and am SO interested in what you have to say. I am in the middle of breast cancer treatment (stage 3), but I have taken what might be considered the opposite approach of Lizzie, and maybe of you. I decided to do everything I could to keep my breast, having chemo first to shrink the tumor, opting for intense radiation etc. Perhaps I was just as shocked at people who suggested I just "chop them both off" when they found out about my diagnosis. Even my daughter (but I understand her, she wants me in her life forever).

    The decision is personal. But when you have a blog (as I do) or write something for MSNBC, you open yourself up to hear everyones opinion, and thats not always comfortable.

    Its just very, very hard because there is so much we don't about breast cancer yet and so much conflicting information out there.

    Love your blog.

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  3. People can be surprisingly cruel...

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  4. Hi Kayleigh,

    Thanks so much for linking to me from your blog. Please -- send your readers my way! You raise an interesting question for which I don't have an answer, so I've emailed my genetic counselor for clarification. I know studies are being conducted on the effect of exercise on risk reduction (I tried to volunteer for one such study but was turned away because, ironically, I exercise too much already!). But my general sense (and call it pessimistic) is this: give that we know Tamoxifen (a scary chemical) reduces risk by about half (so, down to less than fifty percent), I'm guessing exercise, healthy habits, etc, can't reduce it much more than that (or else they would recommend that over the drug, right?). So it all comes down to what's acceptable to you, risk wise. If I was told, eating right and exercising would reduce my risk to that of the average woman (about 12%), you better bet your boobies I'd sign on for that. (I would do anything to be average.) But if they said it will reduce your risk about five to ten percent, we're still talking 70-ish percent, which are pretty damn good betting odds in Vegas, but not on my body. Anyhoo, all of this is to say, I'll look into it and see what I can come up with for a future post. As for mitigating genetic factors, there are studies examining that, as well. In fact, I know NYU is recruiting women in their 70s and 80s who are gene carriers who have never had cancer. The idea is that these women might have some other mutation that protects them. All of this research is exciting and the results potentially life-saving. And I hope it will help the next generation of BRCA mutation carriers. But for me, well, you know, I'm not going to have boobies to worry about much longer, and I'm at peace with that sacrifice.

    And hello to Brenda! Thanks for reading and commenting. I want to be clear that I definitely believe in informed conversations between affected women, and I respect everyone's right to make her own choice for what's right for her. I dislike people who call BRCA previvors nuts or try to sell us snake oil instead. But yes, every woman's journey is different, every choice she makes is individual, etc. From the first, I've always argued I'm doing what's right for me, and I realize people will disagree. I was just really hurt (by proxy) by the cruel comments and ignorant suggestions people made about Lizzie. Sure, Lizzie and I have decided to be public about our choices, and yes, when we invite people into our private lives, they are bound to make judgments. I guess, and this is my sincere hope, that I'm being TOO cautious. That in five or ten or however many years, research tells women oh wait, you don't have to cut off your boobs. We've come up with something better. But my personal risk threshold won't let me wait for that moment. So, thus, surgery. Thanks for reading, and I wish you the best on your road to recovery.

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  5. Another great post. I just read these stories. I read some of the comment's on Lizzie's story and had to stop as I was becoming defensive and emotional as you did. I just don't understand people sometimes. I suppose they forget that it is a human being they are talking about. To suggest that she is selfish for wanting children because she has "bad genes" is terrible. Also, having the BRCA mutation doesn't necessarily mean that the gene will be passed on to our children. Seems like the naysayers are implying that people like us, with the BRCA mutation don't deserve to come into this world at all. Man, those are fighting words! It makes me sad that there are people that think that way. :(

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  6. I for one think that this is a very brave decision. It's not for everyone, but considering the odds of getting cancer it is an extremely rational and responsible choice.

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  7. I didn't write the piece to elicit sympathy, rather I wrote it to inform other young women to insist on screening that would enable early detection and a better prognosis.

    I fell through the cracks with the old guidelines. I am outraged that the government has upped the age for mammograms to 50 with biannual exams. Mammograms are still the gold standard for early detections. Until the medical community develops something better, getting a mammogram is critical.

    I was not informed about the BRCA tests until after my diagnosis. Although I am unsure what I would have chosen if I knew my BRCA status earlier, I wish that I had been given a choice.

    Stay strong. Be well. Sara

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  8. Thanks so much for writing, Sara. I certainly wasn't taking any exception with your reasons for writing your story (and I'm glad you did, even though it is so sad). I was just surprised by the different reactions from readers. I think both you and Lizzie deserve sympathy, even if that's not why either of you wrote. I just wish people as nice to previvors and they are to survivors.

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