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Flat and Proud

I have zero tolerance for hiding. I came out to my father when I was 22. His response? “This can be our secret.”

Don’t worry — he and I have worked through it (hi dad!) — but his first reaction was to ask me to hide myself (to buy into my shame) to spare himself and others the discomfort of seeing my true self.

Fifteen years later, I was diagnosed with breast cancer, and I heard a hint of my father’s voice in the words of the plastic surgeon. He offered to reconstruct my breast by carving out a slab of my back muscle, wrapping it around my front, and tucking it over an implant, like a steak over a tennis ball. (Called a latissimus dorsi flap, the surgery is one of the most common reconstructive options after breast cancer.)

“Isn’t that back muscle doing something?” I asked.

“You’ll look normal in clothes,” he shrugged. “That’s all most women want.”

Really? Is that really ALL most women want?

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Runner Chooses “Boston Over Boobs”

Today is the annual running of the Boston Marathon, no small affair in my adopted hometown. Last night, I read a feature story in the News Sentinel about a marathoner and breast cancer patient who chose the Boston Marathon over her breast reconstruction.

Peg Hoffman. Photo credit: Reggie Hays of News Sentinel

According to the article, Peg Hoffman of Fort Wayne, Indiana, went through four grueling surgeries in an attempt to reconstruct her breasts after cancer. Here are the two sentences that stood out to me:

“She chose the surgeon’s option for immediate breast reconstruction.”

And then a quote from Peg:

“I went into it (the first surgery) very carefree…but it got scary. I had a number of issues, infections, skin dying, and I had to have three more surgeries to fix these.”

Carefree to scary

I couldn’t help but wonder if Peg’s surgeon told her about the 30 percent complication rate of breast reconstruction? Or that most women undergo four or more surgeries? Did the surgeon reveal that immediate reconstruction has a higher complication rate than delayed reconstruction? If the surgeon had, most likely Peg wouldn’t have been “carefree” going into it or surprised when complications arose.

Soon JAMA will publish the results of the Mastectomy Reconstruction Outcomes Consortium (MROC) the first study to measure complication rates and final outcomes across reconstructive surgical options. My hope is that surgeons and patients alike will use this new information to guide their conversations and decision-making processes.

In the rush to reconstruct, it’s women who pay the price.

Eventually, Peg’s complications were so severe that she had to choose — either continue trying to reconstruct or go flat, let her body heal, and achieve her dream of running the Boston Marathon. She chose the marathon and even made a training shirt that said, “Boston Over Boobs.” Go Peg!

Peg’s hometown paper ran this feature as a feel-good story, but what this article does so successfully (and obliviously) is highlight the lack of information women are given prior to reconstructive surgeries and the high costs of reconstruction, not just the dollar amount but the months of healing required at a time when women are in the prime of their lives — when many would rather be following their passions, nurturing their careers, and/or raising their children.

I am not anti-reconstruction. I am pro-choice in every way. But women can’t make good health care decisions if they don’t have good information. Education = empowerment.

FLAT Update

Yee-haw! FLAT has a cover! I hope you like it as much as I do. Hopefully, the title on the physical cover will be “debossed,” which is the opposite of embossed. That means it’ll have a sunken texture, just like me. (Am I hilarious or what?) Okay, so FLAT’s pub date is only 22 weeks away. But why wait when you can pre-order from your local bookseller, IndieBound, or here? Can’t wait to share this with the world. But the nerves are kicking in and they are no joke. Here’s to six more months of sleepless nights (clink).

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The Decision to Go Flat

Recently, Florence Williams interviewed me for her Audible original series podcast Breasts UnboundFlorence Williams is a science writer extraordinaire and author of several award-winning books including Breasts: A Natural and Unnatural History (W.W. Norton 2012).

Click here to listen. My segment is 22 minutes into the podcast. I know not everybody’s got that kinda time, so I’ll see about getting a transcript. But, in the meantime, here are a few of my talking points.

  • My hope in writing FLAT was (is) to expand the conversation around options post-breast-cancer diagnosis. When I was diagnosed in 2009, I was pressed against cultural norms and assumptions of the importance of breasts and other people’s ideas about “what makes a woman.”
  • The predominant (and patriarchal) assumption is that breasts are paramount to a woman’s sexuality. Therefore, folks go straight from the breast cancer surgeon’s office to the plastic surgery consult without question. Patients are rarely encouraged to think about what they want for themselves versus for their partners and/or so they can pass in public as a woman untouched by cancer.
  • I applaud folks having the choice to reconstruct and the fact that health insurance companies are required to pay for reconstruction post-cancer. But breast cancer patients can’t make a fully informed choice unless they know their options. For example, I saw four different surgeons. Each described various reconstructive scenarios. Going flat was never mentioned.
  • Also never mentioned by the four surgeons were the risks of reconstruction, such as the high rates of complications and infections. Even under the best circumstances, most implants must be replaced every 8 to 10 years. A breast cancer patient who chooses implants as part of her reconstruction consigns herself to a lifetime of maintenance. This is no small thing.
  • Almost 40 percent of women in the United States who undergo mastectomy for breast cancer do NOT reconstruct, according to a 2014 study published in the Journal of Clinical Oncology. That’s 4 in 10 women. Other studies suggest the number is even greater. Yet, when we see representations of breast cancer survivors in the media they ALWAYS have breasts. Where are the 40 percent? Why are they invisible?

A Happy Pink Story: The World Wants What It Wants

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In his essay “On Homecomings” for The Atlantic Ta-Nehisi Coates wrote was about his deep longing to move back to his old Brooklyn neighborhood and how his plans were thwarted by celebrity-chasers. About the mining of his privacy for a gossip rag, he wrote: “If the world wants a ‘writer moves to Brooklyn Brownstone,’ story, it’s going to have one no matter your thoughts.”

On the eve of Pinktober, this sentence struck me hard because I’ve had a similar experience with breast cancer.

The world likes a breast cancer survivor with good-as-new breasts, but that is not my story.

I chose not to reconstruct because I didn’t want to sacrifice a back muscle to create what the plastic surgeon referred to as “a breast-shaped mound.” Now, seven years later, I’m not arguing against reconstruction. I believe women need to be fully empowered to make any and all choices about their bodies. But a fully informed choice is predicated on having all the options.

A lot of women take comfort in the happy pink story “no matter your thoughts.” But I can’t help but wonder how many women don’t yearn for a story with an alternative ending. In the weeks after my breast cancer diagnosis, I saw four surgeons and not a one mentioned going flat was an option for me. Going flat isn’t every woman’s choice but it needs to be on the menu.

Like fairytales reimagined with strong girls who don’t need to be saved by a prince, I’m hoping my story about a breast cancer survivor who didn’t need to re-create her breasts to feel whole again, to feel like a woman again, will be a refreshing update to a stale ending.