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After mastectomy some women don't want to replace their breasts - The Washington Post

During her training as a breast surgeon, Deanna Attai, an associate professor at UCLA's David Geffen School of Medicine, read studies and heard mentors say that women who opted against breast reconstruction after a mastectomy generally had a lower quality of life.

But Attai found that didn't jibe with what she was had been seeing online in the past few years: Facebook groups with names such as "Not Putting on a Shirt" and "Flat and Fabulous" that included many hundreds of women's happy stories — and photos — about their choice to have an "aesthetic flat closure,'' the term used by the National Cancer Institute starting in 2020, and forgo breast reconstruction.

So Attai did her own survey of close to 1,000 women who'd had a single or double mastectomy without reconstruction. Published last year in Annals of Surgical Oncology, it found that close to three-quarters of the women said they were satisfied with the outcome.

No government or organization tracks the number of flat closures each year. According to the National Breast Cancer Foundation, close to 277,000 cases occurred of invasive breast cancer in 2020 in the United States. The American Society of Plastic Surgeons, reported that about 140,000 mastectomies were done that year, about half of which involved further reconstructive surgery.

Flat closure has always been an option, but Anne Marie Champagne, a PhD student at Yale whose research is focused on this issue, says there was a change in attitudes about flat closures in online conversation beginning in 2012. Champagne, 53, who opted for flat closure after a 2009 mastectomy, says before 2012 there were only two posts about flat closure on the Breastcancer.org message board. "That year I saw a post by the founder of the advocacy group Flat Closure NOW! that read: I want to see you. I want to form a union. I wish it was acceptable to be flat … if that is your choice, I do hope that women who see me, flat as can be, see that reconstruction isn't par for the course."

What struck Champagne wasn't just the post's content, but the number of people who read it. "At most, Breastancer.org messages got a couple of thousand views," Champagne says. "[That] message had 79,000 views and 3,500 comments within six months of posting."

My double mastectomy made me reevaluate: What do my breasts mean to me?

List of reasons

While many women still opt for breast reconstruction, as the numbers from the American Society of Plastic Surgeons make clear, Champagne and others engaged with the issue of flat closure tick off a list of reasons, including increased awareness of the option, for what cancer doctors and surgeons say is a growing interest in going flat.

"I definitely have seen more patients requesting to go flat after mastectomy, likely as they feel more empowered to make this decision," says Roshni Rao, chief of breast surgery at Columbia University Medical Center in New York.

"A breast cancer diagnosis can be particularly overwhelming because there are so many decisions to be made in a short period of time including choices of doctors, a treatment plan and the woman's post-mastectomy chest," says Attai, in an email. There's more awareness now that the process of reconstruction has risks. "Women who opt for reconstruction, whether a breast implant or their own tissue (called autologous reconstruction) could face multiple surgeries, post-surgery recovery, a 10 percent risk of infection which can get in the way of a chemotherapy or radiation schedule, and, occasionally, implant recalls and removals."

For women who want to do reconstruction, Attai says, they often feel the effort and risk is worth it. "But for others, it isn't."

It wasn't for Pepper Segal, of North Carolina, who was diagnosed with breast cancer three years ago, while pregnant, at age 31. She was induced to deliver her baby at 36 weeks, and continued chemotherapy two weeks after that. But soon after, she felt a pain in her armpit that turned out to be the cancer spreading. Segal had an emergency mastectomy and decided to remove both breasts — and have a flat closure.

"I was told that if I wanted to have reconstruction I should wait two years, because my form of cancer has a high rate of recurrence and detecting it can be harder with implants or an autologous reconstruction," she says. "But I decided on the flat closure. I didn't want to put my body through anything else."

Her surgeon, however, persuaded her to leave some skin for possible future implants. She is now pursuing surgery to remove that extra skin.

Segal says she "thanks God for Billie Eilish" and her signature baggy clothes. "I can dress in baggy clothes, and it looks cool now."

Expectations have changed

Sagit Meshulam-Derazon, a plastic surgeon at Rabin Medical Center in Tel Aviv who specializes in breast reconstruction, says she and her medical partner, also a plastic surgeon, recently talked about the choice they would each make if they were diagnosed with breast cancer. Both agreed they'd opt for flat closure, noting that the expectations of how a woman should look as changed a lot.

"Look at Andie MacDowell, the actress, who is now playing roles without coloring her gray hair," Meshulam-Derazon says. "What women look like these days is more often what they choose to look like, rather than an idealized image."

A transgender woman is challenging Chicago's definition of the female breast

Champagne also says she thinks that the online photos from transitioning transgender men's post-mastectomy flat chests has played a role.

"I had several friends who transitioned in the years leading up to my diagnosis and surgery, and saw what their flat chests looked like, which made me feel like I had more options," she says. "Societally we've become more open to a wider array of body expressions."

The women in Attai's survey, however, as well as postings on the social media pages of flat closure advocacy groups, find that some women get pushback, and outright denial, from their doctors when they bring up the idea of flat closure or say that's want they want.

Some 22 percent of the women who responded to Attai said a flat closure option was either not initially offered by their surgeon, or was not supported by the surgeon, or the surgeon intentionally left additional skin in case the patient changed her mind. That extra skin would require further removal surgery if the woman did not change her mind about the flat closure.

"I did you a favor," is what Champagne's doctor told her when he walked into her hospital room post-mastectomy to explain he'd left extra skin for reconstruction.

"Even though I went into surgery thinking we were in agreement on the closure," Champagne says. "I had made my wishes clear. To this he replied that in his experience all breast cancer survivors reconstruct within six months. When I heard his words I felt profound grief, a combination of heartache and anger. I couldn't believe that my surgeon would make a decision for me while I was under anesthesia that went against everything we had discussed — what I had consented to."

She is not currently contemplating revision surgery to remove the excess skin.

Kim Bowles, 41, of Pittsburgh, says her surgeon's decision to ignore her stated decision to have a flat closure is what galvanized her into starting the advocacy group Not Putting on a Shirt. "As the anesthesia started taking effect, I heard the surgeon say he was going to leave some skin, in case I change my mind, and it was too late for me to protest. I woke up with a look I didn't want," she said.

Now, the organization's website includes a list of plastic surgeons who do aesthetic flat closures and provides talking points for patients to help them discuss the procedure with their doctors. Bowles had revision surgery three years after her original operation.

Not an option for everyone

Not everyone can have or wants to have a flat closure. Kelsey Larson, head of breast surgery at the University of Kansas Health System, says it's important for patients to consider first and foremost how any surgical choice may affect their cancer treatment and cancer outcomes.

"It's very important for patients to keep in mind that they are having a mastectomy for a medical purpose, as part of cancer prevention or treatment," she says. Larson says she would "encourage any patient receiving cancer care to ask questions" specifically about those issues.

Years ago when my twin got breast cancer I took drastic action and am grateful I did

Elizabeth Mittendorf, chair of surgical oncology at Harvard's Brigham & Women's Hospital in Boston, and a Susan G. Komen Foundation scholar, says heavier patients especially need to talk to a plastic surgeon, rather than a general surgeon, before opting for a flat closure procedure, and be prepared that the look might not be the smooth, flat one you hope for.

Excess tissue in women who carry more weight often means it's not possible to achieve a sleek, flat look, Mittendorf says. And it might be necessary to do more than one surgery to allow sections of the woman's body to heal before completing the procedure.

Larson says that while she welcomes the increased attention to flat closure so that women can choose the option they want, she worries that women who do want breast reconstruction after mastectomy might now feel hesitant.

"I've had patients, in recent years, whisper to me about wanting reconstruction," she says, "They worry they'll be judged poorly for choosing breasts."

Growing interest

As a sign of the growing interest in flat closure, sessions on how to communicate about it with patients are popping up at medical breast cancer meetings. Both Attai and advocates such as Bowles have been asked to give presentations.

That's important, says Scott Kurtzman, head of surgery at Waterbury Hospital in Connecticut and chair of the National Accreditation Program for Breast Centers (NAPBC), a program of the American College of Surgeons.

"I'm sure there are many surgeons who have their own idea of what the female aesthetic should be, and they have a difficult time releasing that and accommodating people who don't share the same view," Kurtzman says.

The NAPBC is now asking breast centers to report back to the board about how they do share decision-making on post-mastectomy choices and show evidence that they are accepting patients' requests for whatever aesthetic a patient chooses.

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