When Boobs Go Bad
A Welcome to Breast Cancer Awareness Month
By Christy Avila, M.A. and Sara Nash, Ph.D.
Breast Cancer Awareness Month is here again. Each year in the United States, an estimated 288,000 women learn they have breast cancer. While many survive, almost 45,000 die annually from the disease.
Upsetting, right?
If you’re healthy, and we hope you are, you probably don’t want to think about cancer. We sure didn’t. But unfortunately, cancer still found us. Christy received her dreaded diagnosis at the age of 38, Sara at age 40. One day we were living our best lives, the next we were fighting for them, navigating a terrifying world of doctor visits, tests, waiting, more tests, and finally, our debilitating cancer treatments. At the same time, we found ourselves thrown into another related world of breast reconstruction.
We wish we’d known about this other world before we got sick. Frankly, what happens there is alarming, and we weren’t prepared for it. This article may not be an easy read, but we believe it’s worth your time. If you agree, we hope you’ll consider sharing it with your friends and family, just in case they ever go through something like this too.
But first, spoiler alert: We are two women without boobs. Yes, that’s right — no boobs. We never imagined losing our breasts and certainly didn’t enjoy it. But when we got cancer, they had to go.
As standard practice in these circumstances, plastic surgeons offered us replacements — known as “breast mounds” — made from implants, fatty tissue, and/or muscles from our stomach, inner thighs, back, or butt. Their goal was to reconstruct mounds that would make us “look normal in clothes.” Unlike our original breasts, however, the new ones would forever lack sexual feeling or the ability to breastfeed. At best they would be numb but reasonable-looking approximations of the originals; at worst, they could be disastrous.
Our doctors did not present the increasingly popular alternative to breast mound reconstruction, a smooth chest wall reconstruction called Aesthetic Flat Closure (AFC). Nor did our providers explain that flat closure, when performed by a properly trained surgeon, involves only one procedure at the same time as the mastectomy and, when compared to breast reconstruction, is always the medically safest and healthiest option. We did not know that going flat would spare us between one to five (and in some cases, up to ten or twenty) reconstructive surgeries, as well as other potentially-serious health complications. We had to discover and choose the flat option for ourselves, in a decision-making process that was much harder than it should have been.
Today, we are part of the growing international flat movement with tens of thousands of other women who are rejecting or reversing plastic surgery reconstruction after cancer. As more women share experiences of going flat, the movement is gaining momentum.
October 7th is International FLAT Day, a day to celebrate and raise awareness about the benefits of flat closure and the dangers of reconstruction. As International FLAT Day nears, we want to challenge the prevailing message that women need to reconstruct breasts to retain their value, wholeness, and desirability after cancer.
We hope that you or your loved ones are never diagnosed with this disease. Unfortunately, one of every eight women will receive a breast cancer diagnosis in her lifetime. While you cannot eliminate your risk of breast cancer, you can learn about the risks of reconstruction and the choice to go flat before you’re in the thick of it.
We believe the case against reconstruction warrants your full attention, the kind you can only have when you’re healthy and clear-headed, when neither your boobs nor your existence are immediately on the line.
Plastic surgeons to the rescue
If you need a single or double mastectomy, you probably won’t have time to absorb the reality that one or both breasts will soon be removed from your body. Those parts of you, which have been yours since adolescence, will be gone forever.
As we tried to fathom this impending loss, our medical teams rushed to the rescue with referrals to plastic surgeons, who called us to schedule consultations before we even heard from our oncologists, radiologists, or breast surgeons. We had no time to pause and sit with our fear, no space to grieve or regroup. We literally weren’t home from hearing, “You have cancer” when the plastic surgeon’s office called.
At these seemingly mandatory meetings, doctors told us why we should reconstruct and urged us to start the process during our mastectomy surgeries. They told us this is what most women do, and that it would save us from the trauma of ever seeing ourselves without breasts. They said that, in the end, reconstruction would preserve our self-esteem, keep us feeling like women, and help our sexual partners still feel good about us.
When women facing a life-threatening illness are also threatened with social and sexual rejection, reconstruction can appear very compelling and seem like the right path to take. And, when doctors don’t even mention the flat option, reconstruction becomes the only path to take.
Reconstruction is safe, right?
The history of “improving” women’s breasts at the expense of our health dates back to at least the 1890s, when male physicians started injecting various substances into women’s breasts including ox cartilage, silicone, paraffin, snake venom, and rubber. Doctors also inserted glass balls, yarn, sponges, and polyethylene chips. Patients suffered predictably devastating outcomes, with many requiring total removal of their infected breasts. These practices continued until 1950, and the first contemporary implant was introduced in 1962.
As unsafe as these early medical experiments were, today’s practices are not so different. Reconstruction is a surgically-installed semblance of breasts made with non-breast materials, including silicone, saline in a silicone shell, cadaver skin, and tissues taken from parts of the body that will never be the same. Plastic surgeons can even relocate ear cartilage or skin from the highly sensitive labia to make imitation nipples that have no sensation on the chest.
Given their common use in reconstruction and breast augmentation, many people view implants as safe and risk-free. However, all implants can leach chemicals into the body, rupture, grow mold, and cause over fifty systemic symptoms known as Breast Implant Illness (BII). Problems with implants are so widespread that the private Facebook group Breast Implant Illness and Healing by Nicole has grown to over 170,000 women. The group supports women to explant, detox, and avoid getting implants in the first place, and was a pioneering force in bringing Breast Implant Illness into the mainstream. The group has an accompanying website that provides up-to-date information and scholarly articles about the dangers of implants and how to recover after their removal.
Although implant manufacturers and the medical establishment have been slow to acknowledge BII, this is finally beginning to change. In 2019, the FDA pressured the implant manufacturer Allergan to recall textured implants and expanders after discovering their link to a cancer called Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL). In 2021, the FDA announced it would require all legally marketed breast implants to have a black box warning — the most stringent warning issued — indicating that the devices can cause serious injury or death. Most recently in 2022, the FDA released a new bulletin warning the public of more cancers caused by all types of implants.
In addition to implants, a second popular method to create breast mounds is called DIEP (deep inferior epigastric perforators) flap surgery. Surgeons promote this method by explaining that it uses the body’s own tissue and fat to make mounds that are softer than implants and warm to the touch. In this procedure, a surgeon makes two hip-to-hip incisions in a large eye shape to extract abdominal tissue, and then attaches it to the chest wall in a long, risky operation. Potential complications from this procedure are so high that it requires a minimum 3 to 5 day stay in the ICU, months of recovery, and several surgeries called “phases” to complete the process. DIEP usually leaves women permanently numb from their upper chest to lower abdomen and often less physically functional for the rest of their lives.
Don’t you want to look good?
As it stands now, if you get breast cancer, medical professionals will often urge you to reconstruct. Based on the common experiences of women in a nearly ten-thousand-member support group Christy founded in 2019, women report hearing these and similar comments from their medical team: you’ll feel more like your old self, you’ll be more attractive, clothes will fit you better, you don’t want to be concave, and it’s covered by insurance. If you ask about going flat, providers frequently say you won’t like it. They argue you’ll be depressed, your self-esteem will plummet, and you might even need antidepressants to cope. They tell you that women who reconstruct are happier than women who don’t — a statement based on flawed and limited research.
Some women who have decided on a flat closure are denied that outcome, left with extra skin and tissue by surgeons who have decided the women will inevitably “change their mind” and want reconstruction later. This violation, coined “flat denial” by Kimberly Bowles (who experienced it and then founded the non-profit Not Putting on a Shirt), occurs while women are under anesthesia and have no capacity to fight for the choice they had specified. Flat denial happens to at least 10–15% of women seeking a flat closure in the United States. These patients will have to undergo yet more surgery if they want the flat outcome they agreed to. To date, no medical professional has been held accountable for this nonconsensual and traumatic practice.
Clearly, the flat option challenges deeply held views about femininity. Yet cultural notions that women should — and should want to — undergo the risky reconstruction process are undeniably harmful. Just because a practice is popular doesn’t mean it’s healthy or necessary. Consider female foot binding which persisted for nearly ten centuries in China, or medical experimentation on vulnerable, incarcerated, and enslaved people. History abounds with cultural practices detrimental to women’s welfare.
When we were diagnosed, our doctors immediately addressed how cancer would change our appearance, offering prescriptions for wigs and cold cap therapies to partially preserve our hair during chemotherapy. They encouraged us to attend a “Look Good, Feel Better” class, where we were given big bags of makeup to help conceal the visible effects of cancer treatment.
This emphasis on appearance is even stronger in conversations about reconstruction. We’ve heard from countless women whose doctors said, “Your husband married you with breasts,” “You’re too young not to reconstruct,” and “Now you can get the breasts you’ve always wanted.”
Of course, many women feel pressured, swayed by the idea that we might become unlovable, unsightly, or undesirable if we do not reconstruct. But cancer is scary and disorienting enough without having to worry that our personal and professional lives will decline if we don’t conform to societal expectations of “normal.”
We can imagine the increased intensity of this pressure on women who adhere closely to cultural norms of what it means to be and appear womanly. By the time we get breast cancer (or learn that we’re at high risk for it), we’ve spent our lives swimming in a sea of toxic conditioning that tells us our primary value is our physical attractiveness, and that we must do whatever we can to retain our looks. We are accustomed to paying a high price for this endless pursuit.
Looking normal — the assumption being that “normal” women have breasts — can be a strong motivation to reconstruct. Most people want to fit in and feel attractive, including women who go flat.
A common misconception is that women who are flat must reveal their choice to the outside world. In reality, some women feel more comfortable wearing external prosthetics called breast forms in daily life. This practice is widely accepted in the flat community, with an understanding that we are not immune from the influences discussed in this article. While breast forms used to be heavy and uncomfortable, the modern ones are lighter, cooler, and much more comfortable. Instead of undergoing reconstructive surgeries, many survivors find that breast forms achieve the much-talked-about effect of “looking normal in clothes.” Flat women can accomplish this goal, if they desire, without the risks, complications, and discomfort that traditional reconstruction frequently brings.
Any woman on the precipice of breast reconstruction may not realize the extent to which her personal choice has been influenced by socialization. To various degrees, almost all women are taught to endure pain for approval, whether through high heels, toxins in make-up and hair dyes, Botox, lip filler, boob jobs, tummy tucks, butt lifts — the list goes on. We can add to that eating disorders, fad diets, and dangerous exercise regimens; the pressure comes from all sides.
Women shouldn’t be made to feel that we must reconstruct to retain cherished relationships or social acceptance, have an active sex life, or keep our self-worth. But, given that society regards breasts as valuable objects of great necessity, the option to reconstruct can seem imperative.
Consider that the only reading materials in Sara’s renowned breast surgeon’s lobby were several life-size, full-color posters about cosmetic procedures. While Sara waited anxiously to learn more about her breast cancer, the posters signaled: You’re not okay the way you are. There’s something wrong with how you look. We can fix it.
We’ve come to accept these messages from Hollywood, advertising, and social media. Must we also hear them from the doctors entrusted to put our health first?
Nowhere in the many waiting rooms of Sara’s cancer treatments did she find materials about the flat option, body positivity, or acceptance of inevitable age-related changes to our appearance. Although her doctors gave her stacks of informational binders, none contained pamphlets from Not Putting on a Shirt, the international organization that advocates for optimal surgical outcomes for women who choose to go flat after a mastectomy. Nor did doctors share the comprehensive guidebook, Flat and Happy by Katrin van Dam, or provide a list of private online peer support groups like Fierce, FLAT, Forward or Fantastic Flat Fashions, where women share what they wear after going flat. Instead, her folders contained first-person narratives from women who had battled breast cancer and emerged “victorious” — with reconstructed breasts.
Imagine if doctors’ offices displayed posters advertising flat-chested, thriving women running on beaches. What difference might doctors make if they shared the option to go flat in the same conversation as reconstruction, and gave both options equal weight?
Informed consent
Like other forms of body modification, some women are happy with their reconstructed breasts and consider it a worthwhile undertaking. We recognize that reconstruction can be an important part of healing for many, and can offer a sense of control over the helpless feelings that often accompany cancer treatment. We support all reconstructive choices, so long as they are made with proper informed consent. We do not wish to shame or judge anyone who chooses to reconstruct, as so many of us, including Christy, initially made that choice.
It’s okay to get reconstruction. What’s not okay is electing for reconstruction without fully understanding the true ramifications of that decision. Thousands of women say they would have gone straight to flat had they been given this option and informed of all the risks of reconstruction. Many women who have since reversed their reconstruction feel they were unnecessarily harmed by the medical industry, not “made whole” as promised.
When Sara needed a mastectomy, her first instinct was to go flat — an option she knew about only because a colleague went flat after reconstruction failed. Yet when she expressed this, her breast surgeon told her she had to meet with a plastic surgeon before she would perform the operation. Her plastic surgeon acknowledged the problems with implants and promoted the DIEP flap surgery as the “gold standard” of breast reconstruction. That doctor dismissed Sara’s questions about going flat and said, “Being a woman means having breasts. You’re too young and pretty not to have them. Let me make you whole again. Plus, you’ll get a free tummy tuck out of it.”
For a few days, the pitch was pretty compelling. Sara was bald and sick and felt like a medical pin cushion at that point in her treatment. Yet as she sat in the shower contemplating the dangerous, many-months rebuilding of something that would only appear breast-like, she looked down at her tummy. Yes, her stomach was a little round and soft, but it was also intact and full of healthy sensation, even after her c-section. This was her core, what many traditional cultures consider the source of our life force, and she heard a voice inside say, “Please don’t hurt me.”
Only through late-night, desperate posts on obscure message boards did Sara finally discover the Facebook group Fierce, FLAT, Forward, where she met thousands of other women who’d gone flat and felt great about it. In the group, women shared stories about their problematic reconstructions, how they’d spent years getting surgeries, dealing with infections and other complications, and trying to understand the causes of an array of mysterious symptoms. The women were in the dark about these dangers when they opted for reconstruction, and said they wished they’d gone flat from the start.
When Sara finally mustered up the courage to decline reconstruction, her nurse whispered into the phone, “I don’t usually tell patients this, because I don’t want to influence their decision, but I wish I’d gone flat when I had breast cancer. I’ve had ten reconstructive surgeries and they still aren’t right.”
Christy was one such woman who agreed to reconstruction without fully informed consent. During her double mastectomy, a surgeon placed excruciatingly painful plastic tissue expanders in her chest to stretch out her skin for future saline implants. When Christy questioned radiating the expanders, her doctors said it was perfectly safe.
Years later, she was shocked to learn that expanders and implants should not go through radiation, per manufacturer’s guidelines. Additionally, radiating these devices almost always leads to capsular contracture — a complication requiring more surgery — in which the scar capsule around an implant tightens, hardens, and causes pain. Christy’s doctors did not tell her about any of the potential complications associated with breast implants, including the black mold growing in them when she explanted. Instead, they framed reconstruction as essential for rebuilding wellness after cancer.
Besides the health issues, implant reconstruction is uncomfortable. Women routinely describe their implants as cold hard tennis balls pressing on their chest muscles and restricting breath and movement. No matter how good their new breasts look, some women with implant reconstruction struggle with compromised upper body strength, experience discomfort when holding the children in their lives, and have difficulty sleeping on their sides or stomachs. Even the most impressive-looking outcomes can cause problems and require surgical “revisions.” Implants should be replaced every six-to-ten years in surgery, despite many plastic surgeons still referring to them as “lifetime devices.”
Tissue reconstruction, often sold to women as a “natural” alternative to implants, brings plenty of its own dangers. Women using their own tissue for new breast mounds describe serious complications, some life-threatening, including much longer recovery times, more surgeries, and tissue necrosis (the medical term for tissue death), as well as permanent loss of feeling and function at the “harvest sites.” Women who undergo tissue reconstruction frequently spend several years focused on this process.
After the overwhelming weight of a cancer diagnosis, widespread cultural pressure to reconstruct, and the lack of honest information about the flat option, it is easy to see how many women end up with something we didn’t truly understand or consent to on our chests. In our case, we had little time, were terrified of dying, and had young children to worry about. It was easy to get tunnel vision and do as we were told–especially when the people doing the telling were part of our medical team.
When we found out we had breast cancer, we didn’t go home and research reconstruction. We went home and researched cancer.
Put flat on the menu, please
Putting flat on the menu — a phrase conceived by survivor Catherine Guthrie, author of the book FLAT — is an essential step toward giving women fully informed choices about our post-mastectomy bodies. But as creatures of habit, we tend to pick the same menu items we’ve always selected. For this reason, just putting flat on the menu doesn’t go far enough to address the complex issues surrounding reconstruction. We need to take more steps, both individually and collectively, to reach the point where women are truly free to choose whatever is best for us.
For example, we need states to follow Arizona’s lead and pass laws requiring medical professionals to properly inform patients about all the risks of reconstruction. We need states to follow New York’s new law mandating that insurance companies cover Aesthetic Flat Closure surgeries. We need medical teams and our larger society to normalize Aesthetic Flat Closure as a healthy and worthy choice. And, we need major clothing retailers to follow the example of Skarlette, a UK company that makes lingerie specifically for flat women. Sexy undergarments are a wonderful start, and we also need casual and professional clothes designed just for us.
Lastly, we need family, friends, and providers to sit with us in the pain of losing our breasts, let us catch our breath, and remind us that our value and wholeness doesn’t depend on the shape of our chests. We need to know we are still loved and accepted, even if we are flat.
In the end, reconstruction cannot replace your breasts. What risks are you willing to take? How much are you willing to endure? What will you do if your boobs go bad?
Christy Avila, MA, is Vice President of the nonprofit patient advocacy organization Not Putting on a Shirt. She founded the online support group, Fierce, FLAT, Forward, and International FLAT Day. She is on the faculty of the Communication Studies Department at San Jose City College.
Sara Nash, PhD, is a Clinical Associate Professor at the University of Florida’s Counseling and Wellness Center. She also counsels and consults about the flat option in private practice. Sara founded FLATworks, a public campaign to encourage women to consider these issues before they’re facing breast cancer.
The authors recently started the online support group, TeamFLAT, for family members, friends, and practitioners who are supporting women considering the flat option or adjusting to being flat.
The authors thank all the women who contributed their experiences and photos for this article.
