Flat denial: When a doctor flouts a patient's wish to forego post-mastectomy breast reconstruction

Just a few minutes before she succumbed to the anesthesia that had been administered ahead of her double mastectomy, Kim Bowles expressly told her surgeon she disagreed with his plan to “just leave a little extra skin, in case you change your mind.” But the surgeon disregarded her wishes and left flaps of skin hanging from her chest. Three years after her mastectomy, Bowles had to go under the knife again to get rid of the skin flaps and achieve what an aesthetic flat closure—a term adopted only in 2020 by the U.S. National Cancer Institute—would have given her had her surgeon listened to her in the first place. "Nobody expects perfection, but I think the important thing is to have a standard of care that's optimal," Bowles—who subsequently staged a protest march and topless sit-in at the hospital where the mastectomy was performed—was quoted in a Medscape Medical News feature. "A patient like me should not have needed another surgery." Bowles’ story is one that happens to an estimated one in five women who want an aesthetic flat closure following a mastectomy. And her surgeon is among many “flat deniers” who, while well-meaning, disregard their patients’ expressed request to have only a mastectomy without a follow-up breast mound reconstruction. Read: Everyday witnesses to humanity This “flat denial” flies in the face of evidence that an overwhelming number of women prefer to live “flat or asymmetrically” after breast removal surgery. In a recent study of 931 women in the United States who have had a uni- or bilateral mastectomy, close to 75% said mastectomy alone—without breast mound reconstruction—was their first choice. The top reasons cited by these women who preferred to opt out of reconstructive breast surgery included a for a faster recovery and an aversion to having a foreign object placed in their bodies. Dr. Deanna Attai, a breast surgeon at the University of California Los Angeles and one of the study authors, said she first encountered flat denial more than 10 years ago when a patient asked her for a second opinion after another surgeon insisted she see a psychiatrist because she had requested a flat closure. There are various reasons behind flat denial, said Dr. Attai. Some doctors are motivated by a paternalistic sense of duty to do what they believe to be best for their patients while others may not be aware that a flat closure can be achieved aesthetically. A few simply don’t realize there are patients who would actually want the option of a flat closure. Read: Older breast cancer patients not getting as much care as younger patients Hester Schnipper, an oncology social worker, said she often pushes back against breast surgeons who present reconstruction as though it were the only option for patients after mastectomy. "And because most women are so overwhelmed, so scared, so stressed, they tend to go with whatever the doctor suggests," said Schnipper. But even when a surgeon respects a patient’s wish, society often makes it hard for women with flat chests post-mastectomy. In an opinion piece published in the Globe and Mail, communications professional Ellyn Winters-Robinson wrote about the difficulties of finding fashionable clothes designed for women with completely flat chests. A conversation with a local lingerie store where she had been a frequent customer was “like a breakup call,” recalled Winters-Robinson. Meanwhile fashion advice for women who have lost their breasts to mastectomy all seemed to be pushing these women towards scarves and fabrics with busy prints or patterns—presumably to distract from the absence of breasts—and away from low necklines. Read: Extending zoledronate treatment beyond 2 years doesn't help high-risk breast cancer patients on chemo: study Winters-Robinson wrote to the chief executive officers at her favourite fashion brands and pleaded for them to come up with more options for women who have undergone mastectomies but not breast reconstruction. She did not get any response. Dr. Attai said flat denial can lead to harmful physical outcomes for patients. "This isn't just 'my scar's a little thick.' This is much more," she said. "How do you even put a prosthesis on that? And if you're not going to do a prosthesis in a bra, how do you even wear a shirt with all of that? It becomes a cleaning issue and depending on how things scar down you can get irregular fibrosis." Flat denial can also be psychologically damaging. A recent Washington Post article described the "profound grief, a combination of heartache and anger" that one patient felt after her surgeon went back on their agreement to do a flat closure, while the patient was unconscious on the operating table. "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," said Anne Marie Champagne. Read: B.C. Supreme Court judge orders surgeon not to perform a double mastectomy on a transgender teen There appears to be a growing awareness of the issue among patients and doctors. On a Twitter group modered by Dr. Attai—called Breast Cancer Social Media or #BCSM—patients have shared their experiences with flat denial. Last spring Dr. Attai shared her findings—along with photos of the shriveled and sagging skin flaps of women who had been denied a flat closure— at the annual meeting of the American Society of Breast Surgeons, of which she was past president. "No one ever goes into an operation intending it to look like those horrible pictures," said Dr. Attai. "A patient should not have to specify she wants the surgeon to make all efforts to remove redundant and excess skin and fat, but I do think having the discussion and making preferences very clear is important, especially as we've seen that some patients are not getting the desired outcome." Recently the U.S. National Accreditation Program for Breast Centers started asking American breast centres to report their process for shared decision-making on post-mastectomy choices and to provide proof that surgeons are heeding their patients' closure choices. To help women find a surgeon, a patient advocacy group founded by Bowles—called Not Putting on A Shirt—has set up a directory of patient-recommended surgeons who provide aesthetic flat closures. More than 300 surgeons were listed in the directory as of August 2022. Read: Surgeons work for free to teach oncoplastic breast surgery techniques

Flat denial: When a doctor flouts a patient's wish to forego post-mastectomy breast reconstruction

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