In honor of Breast Cancer Awareness Month in October, Yahoo Lifestyle will be publishing first-person accounts of those who have been affected by the disease, which will be responsible for the deaths of an estimated 40,920 women (and nearly 500 men) this year. All women have about a 1 in 8 lifetime risk of developing some form of breast cancer. Awareness, screenings, and early detection can save lives.
When Elizabeth Peppas was diagnosed with extensive, noninvasive breast cancer in 2007, she found herself heading into a devastating surgery: double mastectomy. But she, like so many other women, hoped that her loss would be soothed by having immediate reconstruction of both breasts. She opted for a popular, two-stage process, starting with the placement of temporary tissue expanders between the skin and chest muscle and ending with the swapping in of permanent silicone implants.
“Since I was recently remarried, and was a runner and really fit, I didn’t want to lose that femininity,” Peppas, 60, tells Yahoo Lifestyle about her choice to have reconstruction. “But I would not make the same decision again.”
That’s because the two-stage process instead turned into a yearslong nightmare: near-constant pain, battles with a condescending surgeon who crushed her ribs by overfilling her expanders, and a dizzying series of five surgeries, including one to fix ruptured implants and another to investigate and remove a mass that turned out to be a lymph node filled with leaked silicone.
The saga didn’t end until August 2018, when Peppas decided to “explant,” or have her implants removed, once and for all.
“I absolutely hated them. They felt like shot puts. Every breath I took was horrible,” the North Carolina retiree recalls, adding that she intends to urge others to think long and hard before opting for a process that she believes has more to do with societal pressure than mental or physical health. “When I heal a bit more, I will definitely be a voice to reckon with.”
Peppas is part of an increasingly vocal chorus of women who, for a range of reasons — pain or discomfort, complications, epiphanies about the possible health-compromising effects of silicone — are choosing to explant following post-mastectomy reconstruction. And these women are just a part of the growing movement of women who have embraced “going flat,” or living breast-free, after what many say was undue pressure from surgeons to reconstruct in the first place.
Of course, explanting is not the whole story. Reconstruction can be a godsend for women, with many reporting overall satisfaction with their new breasts, as well as high levels of psychosocial and sexual wellbeing — something being especially touted this week for Breast Reconstruction Awareness Day (Oct. 17), a collaborative campaign of the American Society of Plastic Surgeons, the Plastic Surgery Foundation, and silicone-implant makers Mentor and Allergan. “Breast reconstruction is a physically and emotionally rewarding procedure for a woman who has lost a breast due to cancer or other condition,” the website notes. “The creation of a new breast can dramatically improve your self-image, self-confidence and quality of life.”
That has been true for Victoria Heller, 54, of New York City, who had a double mastectomy with implant reconstruction after being diagnosed with extensive noninvasive breast cancer in 2017. “I couldn’t have faced going flat,” she tells Yahoo Lifestyle. “I love what I have … and they have given me an enormous confidence boost. I was topless everywhere this summer, and feel so much better about my body in general. I consider my new breasts to be something nice to have come out of something that was so horrible.”
She echoes the positive experiences of other women who spoke with Yahoo Lifestyle about their reconstruction, including a 48-year-old Rhode Island mother of two who notes, “I lost what was, but I still have breasts [implants] — and though they’re different, they do feel like mine.” Another woman, 49, of Boston, tells Yahoo Lifestyle that after her unilateral mastectomy and implant reconstruction this past summer, “I’m super-happy. My bοοb rocks.”
Still, those who explant are crucial examples of an oft-glossed-over fact: Reconstruction is not always the good-as-real replacement option — or sanity-saving necessity — it’s often made out to be.
In 2018, an estimated 266,120 women will be diagnosed with some form of invasive breast cancer, along with 63,960 with noninvasive (in situ) breast cancer, as was the case with Peppas. That, combined with the growing numbers of women being tested for BRCA genetic mutations (which vastly increase the risk for breast cancer) and choosing to have preventative mastectomies if they test positive, has led to a sharp rise in the surgery. While there are no precise national counts of mastectomies in any specific year, the overall rate of the surgery, combining both single and double amputations, has increased by 36 percent in recent years — from 66 per 100,000 women in 2005 to 90 per 100,000 women in 2013 — according to one study.
And while plenty of women reject breast reconstruction — about 25 percent of double mastectomy patients and nearly half of single decide to go flat, according to one study — the rise in mastectomies has brought an increase of women being offered and choosing it.
It’s a process that can take various forms: expanders and breast implants (either silicone or saline) placed under or over the muscle; natural tissue flaps, called “autologous” reconstruction (using skin, fat, or muscle from elsewhere on a woman’s body, typically the belly or back); or a combination of those methods, usually depending on an individual’s body type.
Results vary, as a comprehensive new study of patient-reported outcomes, published in JAMA, found (with those who used tissue-flap methods over implants reporting slightly higher degrees of overall satisfaction two and four years out). But reconstruction always brings with it a lack of sensation — something that come as a disconcerting shock, as the fact of expected numbness is not always made clear by surgeons.
Still, according to one report, published in 2017, the rate of women choosing post-mastectomy reconstruction rose 62 percent between 2009 and 2014. The question is: At what price?
Complications — and more surgeries
One in three women undergoing breast reconstruction has complications (ranging from minor skin irritations to major infections), according to the comprehensive new report in JAMA, while one in five requires more surgery, as in the (extreme) case of Peppas. In only five to seven percent of all cases (higher with implants vs. flaps) does reconstruction fail altogether — meaning that the implant must be removed or that the tissue did not survive in reconstructions using a woman’s own transplanted tissue.
But that small percentage of failures does not take into account the women who choose to explant. Andrea Pusic, chief of plastic surgery at Brigham and Women’s Hospital in Boston and a lead author in the JAMA study, estimates from her personal experience that about the same percentage of women — perhaps seven percent — decide on their own to have their implants removed at some point in the process.
“Without data support, it’s hard to say,” Pusic, who is also a spokesperson for the American Society of Plastic Surgeons, tells Yahoo Lifestyle. “But in my own experience of 17 years, I think it’s not uncommon that women will want their implant removed for discomfort or pain … or that there’s something about the feeling of it that she just doesn’t like,” she says. “They shouldn’t feel that they have to keep their implant. Reconstruction is for my patient, it’s not for me. The reason we do this is for the patient’s quality of life, and if it’s diminishing her quality of life, then by all means she should have it removed.”
That’s what Tiffany Ostman, 37, a mother of three in Chesapeake, Va., ultimately decided to do. Ostman was diagnosed at age 29 with noninvasive cancer in her left breast, plus something “suspicious” detected on the right. At her doctor’s urging, she had a double mastectomy followed by immediate reconstruction with implants. But that was just the start of a long and painful road that included an astounding number of surgeries as well as tussles with her doctor, whose attitude was unfortunately less supportive than Pusic’s.
“I never knew it was an option to not reconstruct,” Ostman tells Yahoo Lifestyle now, recalling how her choices were not fully presented to her. (A small study analyzed the rushed and unsupported ways women often face reconstruction choices, noting, “The decision process is complicated by the stressful circumstance of being recently diagnosed with breast cancer and the compact timeline for decision-making. … Other than consultation with the surgical oncologist and plastic surgeon … most hospital settings do not have a formalized structure in place to help women make decisions.”)
Ostman’s difficult reconstruction process included close to 10 additional surgeries to make revisions, the development of lymphedema (chronic swelling that occurs after the surgical removal of lymph nodes, a standard part of mastectomy), and a torn chest muscle, which prompted her plastic surgeon to want to “go back in, pull fat out of my hip, put it in a concave spot, and pretty much call it a day. He wanted to make them pretty.”
That was the final straw for Ostman. “That’s when I was like, ‘I’m done. Enough.’” She realized she wanted to go flat once and for all, and felt emboldened to do so by a friend who had endured breast cancer treatment and told her — before she died — “Your bοοbs don’t define you.”
Her surgeon’s demeanor became combative, however, when Ostman informed him of her decision.
“He looked disappointed and seemed annoyed from then on,” she recalls. And instead of making her flat during explant surgery, as she had asked, the surgeon left behind pockets of skin in case she changed her mind — a paternalistic bait-and-switch that’s reportedly happening way more often than it should. Kim Bowles, one of the leading voices in the cause, who has appeared on the Today show and held topless protests outside the hospital where she had her surgery, calls it “flat denial.”
Alas, when Ostman asked her surgeon about the extra skin pouches at her six-month follow-up, she recalls, “He grabbed one and pulled it and said, ‘Well, you have a little room there. How would you feel about some tiny implants?’ No! They just can’t fathom why we wouldn’t want bοοbs.”
Pressure to reconstruct
What’s at the heart of so many of these explant stories, beyond the unforeseeable complications, is what patients describe as the almost bullying pressure from their surgeons to reconstruct in the first place.
Pusic admits she is “dismayed” to hear about it. But, she says, “Not to excuse it, but some of it may be with good intentions, in the sense of wanting to spare and mitigate some of the body image changes that happen. I think, as a surgeon, with a young woman having bilateral mastectomy without reconstruction, that can be a bit of a jarring image. And to some extent, it might be just trying to minimize the tough parts of dealing with breast cancer. But it might be a bit misguided.”
Deanna Attai, an assistant clinical professor of surgery at the David Geffen School of Medicine at the University of California Los Angeles and past president of the American Society of Breast Surgeons, tells Yahoo Lifestyle she has “no idea” why surgeons would pressure women into having reconstruction against their will. “I don’t know if it’s just like all surgeons feel that all women identify with their breasts? Many women do, but I have many cancer patients who say, ‘You know, they don’t mean anything to me, and especially now.’ The patient should never feel pressured to do one thing or the other.”
Attai recalls meeting with a BRCA-positive patient several years ago who had come to her for a second opinion about her preventative mastectomy, and that the patient had been adamant about not wanting reconstruction.
“She said, ‘The reason I came to you was I saw another [female] surgeon, who said she would do the mastectomy without reconstruction but insisted that I get a psychiatric evaluation first,’” Attai recalls. “I just looked at her and thought, that’s kind of crazy. She was a professor at a local college, she was well spoken, well educated, and this was something she clearly had been thinking about for a long time. I just had no idea that attitude was out there.”
Catherine Guthrie, a health journalist and author of the new memoir Flat: Reclaiming My Body After Breast Cancer, sees the pressure from surgeons as the result of a complex and sexist paradigm. “To the average (‘unwoke’) breast or plastic surgeon, a woman facing mastectomy is standing on the brink of losing her worth, her status, her desirability,” Guthrie recently told The Last Word on Nothing. “If those are the stakes, who can blame physicians for pressuring women to reconstruct? Through a paternalistic lens, a breast cancer patient must reconstruct lest she lose the gaze of her boyfriend, husband, or — for single women — future boyfriends and partners.”
Guthrie continued, “It’s 2018, yet it’s still not uncommon for a woman who requests a double mastectomy without reconstruction to be sent to a psychiatrist by a surgeon who fears his patient has lost her mind. The fact that breast cancer care continues to privilege the male gaze speaks volumes to the lack of agency women have over their bodies.”
Andrea Kelsall learned that lesson the hard way. After her stage III diagnosis in 2013, at the age of 43, the Vancouver, B.C., nurse faced a cavalcade of treatments: double mastectomy, chemotherapy, radiation, and hormonal treatment. She did not have reconstruction right away.
“When I was first diagnosed, my only thoughts were: Take it out, get it off. My breasts had served their purpose. They had fed my three children and I had no need for them anymore,” Kelsall tells Yahoo Lifestyle. “The relief I felt after waking up from my original left side mastectomy was amazing. I was content with being flat on that side and considered all my options during the chemo that followed. It was my husband [a physician] who convinced me to see a plastic surgeon.”
He wrangled her an appointment with one of the area’s top doctors, who “was certain she would be able to ‘make me feel better,’” Kelsall recalls, noting that, in hindsight, she was simply feeling tired from chemo, not depressed about her breasts. But, she says, “my husband was keen on the reconstruction, and I guess I was too.”
Kelsall was pleased with the initial results and soon moved forward with nipple reconstruction. But within about three years she developed “unbearable” pain due to a complication known as capsular contracture — the tightening of scar tissue around an implant, a particular risk for women undergoing radiation therapy, which can cause tissue damage.
Once again, Kelsall was ready to go flat. But once again, her husband and plastic surgeon urged her to give reconstruction another go, so she had her implants removed and replaced in the spring of 2017. The pain of contracture returned by summer, but Kelsall waited almost a year to see the plastic surgeon so she could bolster her confidence and not be “talked into doing it again.” She got her husband and surgeon on board with going flat, and finally explanted in September.
“A really nice immediate change was feeling warmth on my skin,” she reports. “My fake bοοbs were cold all the time. The skin was icy to touch. Now the skin is warm again.” She’s being open about her story, she explains, because “I don’t think I should have had to endure all these surgeries for some ‘expectation’ of how I should look.”
Samantha Paige, of Los Angeles, also arrived at that realization circuitously. After opting for a preventative double mastectomy in 2008 because she tested positive for the BRCA-1 gene mutation, she had reconstruction. “I got the biggest implants my body would take and walked away from it with a gorgeous pair of breasts that were big and perky,” recalls Paige, 43. But she found her new breasts to be numb, uncomfortable when she exercised, and possibly making her sick, as she soon connected various health ailments (though not supported by studies) to her implants.
Paige made the decision to explant. Her doctor did not pressure her to reconsider, and as soon as they came out, she recalls, “I really have never felt better in my body.” Paige is now a visible “flat activist,” particularly on her Instagram page, Last Cut Project, and even appeared in a 2017 Equinox ad campaign bearing her mastectomy scars.
That similar feeling of empowerment has prompted many others to share their stories with support groups such as Flat & Fabulous, a closed Facebook community more than 7,500 strong, co-founded by a woman who explanted when she felt that her implants were making her sick.
Recently, shared one Flat & Fabulous member in response to a Yahoo Lifestyle query, “I explanted the expanders shortly after my surgery. I didn’t really want [reconstruction] but got talked into it. I got so badly infected that one expander found its way out, and when I ended up in emergency surgery, I halted the whole process. Never got to the foob [fake boob] stage, and I was so relieved it was over.”
Another woman, 66, shared that, while she told her surgeon she wanted to stay flat after her double mastectomy, he warned her she “would regret it.” He directed her to talk to a plastic surgeon, who then persuaded her to do expanders and implants. That led to chronic pain during a year in which she also endured chemo and radiation, eventual capsular contracture, two emergency surgeries for incisions that kept opening, and finally, her decision to explant. “I am now very concave on one side because the expanders pushed in my ribcage,” she said. “I am still in pain from scar tissue from all of the surgeries I have had.”
Be a self-advocate
Pusic, the chief of plastic surgery at Brigham and Women’s Hospital, stressed the importance of patients’ understanding all their options when facing mastectomy surgery.
“I personally think breast reconstruction is not the right thing for every woman,” she says. “What I feel strongly about is that every woman should be provided with the option of reconstruction and also an understanding of the expected outcomes. That, to me, is more key. Because what we don’t want to see is a woman who wishes to have reconstruction and either isn’t fully informed about it or isn’t provided with the ability.” (To that end, the Women’s Health and Cancer Rights Act, signed into federal law in 1998, has required most group insurance plans that cover mastectomies to also cover breast reconstruction.) If the decision to reconstruct is too much to handle in the moment of treatment, Pusic points out, delayed breast reconstruction “is very much a viable option.”
Women should be encouraged to ask questions, she adds, until they find the choice that best suits them. “It’s definitely not a one-size-fits-all,” Pusic says. “Breast reconstruction options really need to be fit to a woman’s own values and preferences, so it’s not like there’s one route.” On a hopeful note, she says, “I think we [as surgeons] are actually paying a lot more attention to patient-reported outcomes, with less of a stance of ‘if my photo looks good after surgery then that’s success.’ I think we’re really trying to understand outcomes from the patient perspective.”
Attai tells patients to make sure they ask all their questions. “And if you’re not getting them answered in a format that you’re comfortable with, go get a second opinion. It’s OK,” she emphasizes. “I do think it’s important as the flat movement is getting more popular,” to understand what’s realistic, as “there are times when it’s not possible to get a completely flat result,” she says. “If you have a patient who is obese, with a larger breast, it’s going to be very challenging.”
Beth Dupree, a Sedona, Ariz.-based breast surgeon who is also board certified in integrative and holistic medicine, says that while she would never pressure a patient to reconstruct, she too feels strongly about presenting all sides. “When someone says, ‘I’m not interested in reconstruction at all, I say, ‘That’s good, but you still have to talk to the plastic surgeon. I need you to have the tools. Twenty to 30 percent of the time, women come back and say, ‘Oh wow, I want it.” Others say, ‘I still don’t want it, but thank you for giving me the information I needed.’ Knowledge is power.”
All the surgeons interviewed for this article believe that a shift within the medical community is occurring, if slowly, to focus on better informing and empowering patients on their options. “There’s also a swing … where for so many years, women weren’t being offered reconstruction, and were depressed and anxiety ridden,” Dupree says. “So it’s a pendulum thing. And we’ve got to come back to the middle.”
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