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Double Mastectomy Decision: My essay in Slate

After my double mastectomy, I published an essay on Slate in response to Peggy Orenstein’s breast cancer op-ed that ran in the New York Times last week. You may recognize a few sentences from my last blog entry. That’s because this topic has been rolling around in my head for a few weeks. Journalists and medical experts who second-guess breast cancer patients’ treatment decisions are a thorn in my side. I’m a fan of medical evidence and a good doctor-patient conversation. But the tone of some of these recent articles is paternalistic and sexist.

Peggy points out that researchers have used the word “epidemic” to refer to  the number of women choosing to remove their healthy breast along with the cancerous one. Really? I’m sorry but Typhoid was an epidemic. The 1918 flu was an epidemic. AIDS was (and in many places continues to be) an epidemic. Women making gut-wrenching decisions about how they want their post-cancer bodies to look is not an epidemic — it’s a choice.

I welcome the conversation about why rates are increasing so dramatically, especially among young women diagnosed with the disease, but let’s do so with respect for the people involved and the complexity of the decision.

Why a Double Mastectomy? It’s Complicated

Last week a new study with an inflammatory headline went viral: “Double mastectomy ‘not necessary’ for most women.” The study, from the University of Michigan Comprehensive Cancer Center, found that 70 percent of women who had a double mastectomy following a breast cancer diagnosis did so despite a very low risk of facing cancer in the healthy breast.

What troubles me about this genre of breast cancer research is the finger-wagging tone. Full disclosure, I had a double mastectomy without reconstruction in 2009. I was 38. I knew the risk of cancer appearing in my other breast was relatively low, but I made the decision that was right for me. In choosing a double mastectomy, I was in the minority. Only 8 percent of breast cancer patients opt for double mastectomy. That means, 92 percent of us choose something else. So why does that 8 percent drive researchers to distraction?

I picture breast cancer researchers in their labs, their clinics, their meetings, scratching their heads and asking themselves, “why do these crazy ladies lop off their breasts? They obviously don’t have the facts. They are making an emotional decision based on fear and anxiety.” And, for some women, that might be true. They might not know that (for most) a diagnosis of breast cancer in one breast does not increase the likelihood of breast cancer recurring in the other breast. They might decide out of pure fear. But I’m guessing the real reasons why 8 percent of breast cancer patients choose a double mastectomy are much more nuanced.

My decision to have a double mastectomy was complicated. A big factor for me was not wanting to have one breast. It might sound silly to some but I didn’t want a singleton. I wanted to be able to wake up, pull on a t-shirt, and walk the dog. That didn’t feel like too much to ask. I didn’t want to have to wear a prosthesis just to feel “even.” Reconstruction, which solves this problem for a lot of women, was not a good option for me. Another factor in my decision was that my remaining breast no longer felt sexy. I feared it would become a lonesome reminder of a terrible time in my life. Plus, I wasn’t planning on having children or breastfeeding.

For me, a double mastectomy made a lot of sense. But my reasons were all very personal and, therefore, difficult to measure in a research setting. I’m guessing other members of the double-mastectomy club have equally complex reasons for making the decision we did. Why must researchers continue to spend good money trying to figure out why we weren’t more swayed by data? Got research money to spend? Spend it on saving women’s lives not second guessing our decisions.

 

Mammography’s Failings: Rage Against the Machine

I was dismayed but not surprised by the recent news of mammography’s failings. As most of you know, per the NYT “one of the largest and most meticulous studies of mammography ever done…added powerful new doubts about the value of the screening test [mammography] for women of any age.”

But what shocked my socks off was the headline appearing in the same paper less than a week later “A Fresh Case for Breast Self-Exams.” The upbeat article highlighted what the writer called the study’s “nugget of hope,” which was that physical breast exams may be “as good as or better than regular mammograms.”

I hear the ’80s calling. They want their breast cancer screening method back.

Previous studies indicate breast self-exams are no better than mammography when it comes to stemming the tide of breast cancer deaths. I covered the topic for Time in 2008. The Cochrane Collaboration (an international organization that evaluates medical research) had just reviewed studies of breast self-exam that involved nearly 400,000 women. Their conclusion? Breast self-checks had no benefit. 

So, before we roll back the clock, before we go back to touching our breasts out of fear, before we give women deja vu, I’d like to hit the pause button.

Can we all please take a collective moment of silence to mourn the failed promise of mammography?

Regardless of whether you choose to believe in mammography (like Amy Robach over at ABC) or you are a dubious science reporter twice screwed by breast cancer (like me), last week’s news was a devastating blow.

Then I’d like to break the silence with a giant primal scream. Because when I think of the tens of billions of dollars spent chasing the “early detection myth,” I can’t help but think of how those billions might have made a difference for the hundreds of thousands of women who are no longer with us. And that makes me hoppin’ mad.

So. Please take a moment of silence and then follow it up with a big scream.

On Pink Washing: Dear Food Makers, Please Shut Up.

Pink washing health claims on food packaging are obnoxious. They are confusing, misleading, and (often) inaccurate. As a science journalist, I know that 99.9 percent of these health claims are hogwash, and I find it morally offensive that food marketers prey on people’s fear of disease to sell products. I actively avoid buying products with health claims or pink washing. So, imagine my surprise when I opened a new container of miso and found a giant health claim lurking beneath the lid. Sneak attack!

MisoSoup

Nothing kills my appetite more than a pink-ribbonly reminder of my mortality. Thanks Mr. Miso!

I will give them a tiny prop for including a study citation, even though its presence could be construed as manipulative because it adds superficial credence to the claim. So, I walked my anger right over to PubMed and looked up the study. A tiny part of me (the sucker part) hoped the health claim was true. But a much bigger part of me (the pompous part) wanted to feel “right” and, therefore, justified in my anger. Guess which part won?

Here’s the miso dish: In 1990, 21,000 Japanese women filled out diet questionnaires that included a question about miso soup. (BTW: Diet questionnaires are notoriously inaccurate because, really, who can remember what they ate for breakfast? Much less for breakfast six weeks ago?) Researchers followed the women for nine years and charted how many got breast cancer. In the end, fewer cases of BC popped up in those women who (reportedly) ate 3+ bowls of miso soup a day.

A few caveats: the study’s small sample size means its accuracy is suspect; miso’s magic only applied to postmenopausal women (bummer for me); I live in the West, not Japan, so my confounding factors are enormous; and, finally, who eats 3 bowls of miso soup a day for years on end? Not me.

When it comes to health claims, even those with citations, don’t be a sucker. Health claims on food packages are nothing but savvy marketing with a scientific sheen. I can only hope that, if we all vote with our dollars, food makers will get the message that we don’t want our fears manipulated at the grocery store.

Yoga, Cancer, and Peace

While undergoing active treatment for breast cancer, I did yoga like a drug. For me, yoga worked better than the anti-anxiety prescription I got from my doctor, better than the marijuana-laced olive oil I got from a generous neighbor.

Yoga is not what you think. Forget power flow. Forget sweating and bending and balancing and contorting. Yoga is breath. Yoga is being fully alive in your body. Yoga is being brave enough to pull your rattling, smoking, fuming body over, lift by  the hood, and not judge what you see. Yoga is the kindest, deepest reality check you can imagine.

During treatment, I did restorative yoga and gentle flows. Practices spent entirely on the floor.  After active treatment, I moved to Boston and discovered Yin yoga, another gentle practice of long holds and deep breaths. With yoga and the help of a gifted physical therapist, I  regained full range of motion in my radiated arm and shoulder.

This morning I stumbled across a beautiful essay in the New York Times,  by my friend Susan Gubar, called Living With Cancer: Patient Yoga. The sentence that struck me most was the second to last. “With relief, I realized the yoga was teaching me to be patient with my frailties.” Amen sister.

Today, my yoga practice looks nothing like it did before my breast cancer diagnosis. It is soft, not hard. It is resilient, not fleeting. I am no longer the teacher. I am content to be the student. Yoga is my way of meeting my body where it is, not judge it for where it isn’t. I use the practice to come home to myself. Thanks for reminding me Susan, and, to repeat the mantra here:

May we dwell in the heart,
May we be free from suffering,
May we be healed wherever healing is called for,
May we be at peace.