complications

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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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.

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?