When Pittsburgh resident Kim Bowles was thirty-five, she was diagnosed with breast cancer. After researching her options, she decided to travel to the Cleveland Clinic in Ohio, two-and-a-half hours away from her home, because the hospital was known for its interdisciplinary approach to medicine.
“I knew that the first step was to get what happened to me out in the open. I also knew that if this had happened to me, there were likely many others who had not spoken up. I had to do something.”
She told her team—including a plastic surgeon—that she wanted to have a double mastectomy. She also told them that she wanted to go flat, making clear that she had no interest in implants or other reconstructive procedures.
Bowles thought that everyone was on board with the plan, but they were not.
In a recent interview with The Progressive, Bowles explained that when she was in the operating room, she heard the plastic surgeon say that he intended to “leave a little extra in case she changes her mind.” Bowles recalls saying, “No!” before becoming unconscious; nonetheless, as soon as she woke up, she realized that the plastic surgeon had ignored her wishes. Bowles calls this “medical battery” and immediately resolved to do something about it.
The Grace Project
Bowles’ determination led to the creation of Not Putting on A Shirt (NPOAS). Formed in the summer of 2018, a little more than a year after her surgery, the group now runs a closed Facebook group for breast cancer patients, curates a “flat friendly” surgeon’s directory, and advocates for what has become known as “aesthetic flat closure.”
The group’s efforts have already yielded results: Thanks to organizing by NPOAS and other breast cancer activists, the National Cancer Institute now includes aesthetic flat closure in its Dictionary of Cancer Terms, and the words “flat denial” are now routinely used to describe medical professionals who violate patients’ expressed desires or fail to inform them that they can go flat.
Still, Bowles says, much more is needed to ensure that physicians are held accountable, and she is eager to mobilize any-and-all toward this end.
Her own activism started with righteous anger after an indignant letter she wrote to the hospital CEO documenting “the arrogant and glaringly immoral behavior” of her physician received no response.
“I knew that the first step was to get what happened to me out in the open,” she says. “I also knew that if this had happened to me, there were likely many others who had not spoken up. I had to do something.”
That something was to whip off her shirt in the reception area of the Cleveland Clinic CEO’s office a few months after her post-surgical chemotherapy ended. Bowles describes the office staff as flummoxed by her bare-breasted protest and reports that although she was not arrested, police were called and she was escorted into the building’s lobby.
Thankfully, she adds, a flurry of media coverage resulted, gaining prominence for both the issue and for the fledgling organization that Bowles was spearheading.
The Grace Project
“One in eight U.S. women will get breast cancer in their lifetime,” Bowles says, noting that approximately 266,000 new diagnoses are made annually. Of them, an estimated 100,000 will have a single or double mastectomy, with 25 percent of double and 50 percent of single mastectomy patients choosing not to have reconstructive surgery.
While their reasons are varied, one key issue is medical risk. According to the Journal of the American Medical Association, a study of 2,343 patients found that 32.9 percent experienced postoperative infections or other complications from reconstructive surgery.
Another study, out of the University of California, Los Angeles, found another insidious factor. Twenty-two percent of the 931 respondents included in the study had not been offered the option of an aesthetic flat closure and may not have even known that this was an option.
“We need to do more research to see why this is, if the age of the patient influences flat denial, or if factors like Body Mass Index influence what patients are told,” Bowles says. She calls this research “the next frontier” in ensuring optimal, fully informed, breast cancer treatment. For now, she says, the information on this subject is largely anecdotal. Worse, without a broad-based, systematic study, advocates can only guess at the number of people whose requests to go flat have been disregarded.
“Most of the people NPOAS speaks to report that they refuse reconstruction because they want to minimize the recovery period, avoid radiation or chemo, or, like me, want to put their cancer behind them,” Bowles says.
This was the case for New Jersey resident Rosa N., who asked that her full name not be used to protect her privacy.
“I was never breast obsessed,” she says. “My strongest identity since I was a teenager has been as a socialist-feminist. I never wore make-up or low-cut blouses, and my breasts were not something I flaunted.” What’s more, she says, “I have a husband who makes me feel like the sexiest person in the universe, and the fact that reconstruction might jeopardize my health made both of us leery and seemed unnecessary.”
The Grace Project
Rosa’s surgery took place in the early 2000s, when she was in her forties, and while she does not regret her decision to go flat, she admits that, “every so often when I look in the mirror, I’m reminded that I had cancer. Mostly, though, I’m so grateful to be alive that I don’t let myself dwell on it.”
Abby S., a New York state resident, says when she was diagnosed with breast cancer in 1995, she was so overwhelmed by thoughts of death that having more surgery was out of the question.
Her son, she says, also influenced her decision to go flat. “At the time, my kids were four and nearly seven. Right before my surgery I was in my bedroom, and my younger son came in and saw me crying. He asked why I was upset, and I told him I had to have all of the tissue in my breast removed and I would have a flat chest on one side. He looked at me and asked an extraordinary question: ‘When you were a little girl you had a flat chest. Were you sad then?’ ”
Abby uses a prosthesis but rarely, if ever, thinks about the cancer she had twenty-six years ago. “I don’t spend a lot of time looking into the mirror,” she says.
Neither does Massachusetts resident Maggie D. “I knew that breast cancer runs in both sides of my family, so I was not surprised when I was diagnosed in 2013,” she says. “I had a double mastectomy because I did not want to worry about the cancer metastasizing. My surgeon initially recommended that I have a single mastectomy since I only had cancer in one breast, but I thought about it and said no. I knew what I wanted, and from that point on I felt no pressure from my surgeon.”
The biggest issue, she says, is that clothes don’t fit well unless she wears a prosthesis, something that she finds uncomfortable in hot weather. Despite this, she says that she has never regretted her decision.
Of course, not everyone easily accepts their altered bodies. Hundreds of online and in-person support groups exist, and a spate of artistic endeavors have popped up to help with healing and self-acceptance.
The Grace Project
The Grace Project began in 2009 as a way to celebrate physical diversity through documentary photography. Boudoir photographer Charise Isis started the project shortly after she took photos of a woman who confessed that she felt “mutilated” by a mastectomy she’d had twelve years earlier.
“That stayed in my heart,” Isis says, “A few months after this experience, I took pre- and post-mastectomy pictures of a friend. I then did a search for other mastectomy photos. The only ones I found were medical shots of headless bodies that were done with gruesome lighting.”
Isis knew she’d hit on something important and created The Grace Project—to date she has filmed 430 people—and hopes the project will eventually include 800 images representing the approximately 800 diagnoses made each day in the United States.
“The shoots are always intimate and always powerful,” she says. “I’ve made sure that the photos capture racially diverse women who have had single and double mastectomies. It’s a beautiful cross section.”
Not Putting on A Shirt founder Bowles champions projects like this but stresses that the issue has to be about fully informed choices.
“As long as the doctor considers the patient’s priorities, presents all of the options, and listens to the patient’s preferences, whatever is decided upon is fine,” she says. “It should always be about what the patient—not the doctor—thinks is best.”