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1 in 3 Women Who Reconstruct Endure Complications

This week, JAMA Surgery published the final results of the Mastectomy Reconstruction Outcomes Consortium (MROC) — the first comprehensive look at how cancer patients fare (physically and emotionally) after breast reconstruction. The New York Times had excellent coverage (aside from the cringe-inducing ending).

Quick summary: MROC researchers looked at 8 different breast reconstructive procedures performed by 57 different surgeons at 11 sites across the US and Canada. They enrolled 2,224 patients and followed them for four years.

Last month, I spoke with Ed Wilkins, MD, MROC’s lead author and a plastic surgeon at the University of Michigan in Ann Arbor. “We designed and conducted MROC because the decision to reconstruct isn’t just one decision, it’s a constellation of decisions,” he said. “And our patients were getting lost.”

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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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Post-Pink Ribbon

Breast cancer awareness month is waning. Last week, at my neighborhood post office, I stood in line staring at a battered, two-foot-long, cardboard pink ribbon taped to the wall. Holding my nephew’s birthday present, waiting for my turn, gazing at the decoration’s tattered edges and sloppy tape, I felt – nothing.

I am post-pink ribbon. I just don’t give a f**k. Anger spent on pink ignorance zaps my energy. I want to channel my energy into life. Theresa Brown summed up the pink insult in yesterday’s New York Times, “Pink is about femininity; cancer is about staying alive.”

In December 2015, my friend Cindy was diagnosed with breast cancer. She had a lumpectomy, radiation, and chemotherapy. We talked on the phone. We compared notes on treatment side effects. We walked her dog. She got through it with grace and wit. She returned to work. All seemed well.

Six months later she had an odd pain in her rib cage. Worry chafed her voice as she described the sensation. I don’t remember what I said. I tried to be optimistic without being dismissive. We both lived with the fear of metastasis. We both knew what bone pain might mean.

Two weeks ago I was reading Sherman Alexie’s beautiful new memoir, “You Don’t Have to Say You Love Me.” when this passage jumped out at me:

Nobody defeats cancer. There is no winning or losing. There is no surviving or not surviving. There are only coin flips: heads or tails; benign or malignant; weight loss or bloating; morphine or oxycodone; extreme rescue efforts or Do Not Resuscitate; live or die.

Cindy lost the coin flip. Her cancer had spread to her bones.

Before Cindy was my friend, she was my physical therapist. She restored the range of motion in my left arm after radiation. She released the scar tissue across my chest from my double mastectomy. She reduced the swelling in my arm when lymphedema settled in for a visit. She was one of the most compassionate and talented healers I’d ever met and I’ve met quite a few.

She’d rubbed shoulders with the disease most of her life. Her mother had suffered from breast cancer. Cindy had spent much of her career as a physical therapist helping breast cancer patients regain freedom in their post-treatment bodies.

Cindy was in her late 50s when she was diagnosed. She had a son in college, a daughter in high school. We often talked about the future, her excitement about her new solo physical therapy practice and her dream of spending more quality time with her husband now that her children were grown.

Cindy died this month. She was 61.

Reject the commodification of women’s pain

Anyone who has lost a loved one to this disease knows breast cancer is not pink; to festoon  kitty litter, vibrators, and fire engines with pink ribbons eats away at the gravitas of this disease. It’s the opposite of awareness; it’s erasure.

Breast cancer is about staying alive. Who lives and who dies has nothing to do with who “fights like a girl” or who “kicks cancer’s ass.” Staying alive is a coin toss. This year 40,610 women in the U.S. will lose their coin flip with breast cancer. Let’s focus on them.

 

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