The Hidden Toll of Breast Implant Illness on Transgender Women
Breast augmentation can play a major role in gender affirmation for individuals living with gender dysphoria, but what happens when the devices meant to affirm your identity diminish your health?
Even as MedTruth has reported on the experiences of cisgender women struggling with breast implant illness and breast-implant associated anaplastic large cell lymphoma, the stories of transgender women have largely been left untold, until now.
This fact reflects the large gulf in our understanding of trans-specific health issues that fall outside of HIV and mental health, said Dr. Joshua Safer, an endocrinologist and executive director of the Mount Sinai Center for Transgender Medicine and Surgery.
MedTruth spoke with transgender health experts and members of the trans community, specifically trans women of color, to paint a more inclusive picture of the adverse effects of breast implants.
In the trans community, breast implants are not only desirable, but they also may prevent anti-trans violence. According to the 2015 U.S. Transgender Survey, the largest survey of its kind to date, 11% of respondents had opted for breast augmentation, and another 40% wanted the surgery someday.
Transgender women who “pass,” or are perceived as cisgender, are much less likely to face violence or discrimination. This holds weight especially for trans women of color, who are facing an epidemic of fatal violence. According to the National Coalition of Anti-Violence Programs, 32 transgender individuals were killed in 2020 — a record number. In 2017, the previous record high year for transgender murders, about 28% of all victims of hate violence were transgender women of color.
But the same implants that may protect trans women may come to harm them over time.
Connie Fleming, a Black trans woman in Brooklyn, N.Y., lived with her implants for eight years before experiencing any problems. Then, over the course of a few years, itchiness around her breast became a persistent symptom. One night, she woke up scratching and felt a lump
Fleming had a mammogram and biopsy at Mount Sinai’s Center for Transgender Medicine and Surgery and was diagnosed with rare cancer, BIA-ALCL, a type of non-Hodgkin’s lymphoma that forms around the breast implant.
Fleming was fortunate to live in New York City, where affirmative care is readily available. Many transgender folks in other parts of the country lack access to academic medical centers with organized programs to serve as resources.
“Even in the big cities, there’s a lack of access because there’s a lack of expertise,” Mount Sinai’s Dr. Safer told MedTruth. “And then you drop off a cliff if you go to a place where there’s no center to help you.”
At Mount Sinai, Dr. Alice Yao co-authored a review that looked at four reported cases of BIA-ALCL in trans women. It concluded transgender women are at risk of delayed recognition and diagnosis because they may not routinely go through the same postoperative follow-up protocols as patients who, for example, undergo breast cancer reconstruction.
Because of her research, Yao was able to diagnose rare cancer in Fleming.
After removal of her breast implants and four lymph nodes, two of which were cancerous, Fleming underwent a course of chemotherapy and radiation. In December, she’ll celebrate her two-year cancer-free anniversary.
“Listen to your body, listen to your mind. Along with your due diligence, ask more questions about dangers. And if they can’t answer them, you have to go somewhere else because it isn’t either/or.”
— Connie Fleming
“Listen to your body, listen to your mind,” Fleming told MedTruth. “Along with your due diligence, ask more questions about dangers. And if they can’t answer them, you have to go somewhere else because it isn’t either/or. You can be yourself reflected and you can bring your health and well-being along with that.”
Fleming is no stranger to pioneering a cause. Before being the first trans woman to speak publicly about her battle with BIA-ALCL, she blazed a trail for trans women in the fashion industry. Known as Connie Girl, she was a celebrity figure and performer in New York’s club scene of the 1980s and 90s, which led to a career as a high fashion model. She continues her work in the industry today as a producer, coach, and occasional performer.
Experts believe that the education of patients and physicians is crucial. Doctors, in particular, should recognize that all patients with breast implants face a possible risk of health problems, not just cisgender women.
Health literacy is a major barrier to transgender women getting proper health care — whether they have breast implants or not. One-third of respondents who had seen a health care provider in the past year had been verbally harassed or refused treatment or had to educate the provider on transgender health, according to the USTS. Fleming echoes this sentiment.
“[Prejudice] is part of the game,” Fleming said. “You have to know and try to protect yourself as much as possible, but it can and most likely will happen. You have to wrap your mind around it and take the punches as they come.”
While awareness of breast implant illness is on the rise for cisgender patients, the same can’t be said for trans patients. And too often, health care providers fail to consider the unique challenges faced by transgender individuals. These issues contribute to patients’ feelings of distrust and can ultimately push them to turn to less reputable options or avoid health care altogether. According to a national transgender survey, nearly one in four respondents avoided seeing a doctor when they needed to for fear of being mistreated.
“The way that we’re doing this one-size-fits-all health care is problematic, and it’s costing people their lives,” Keosha T. Bond, professor of public health at New York Medical College, told MedTruth.
Bond points out that trans women often turn to their own networks to help navigate these systems and health issues. This might expose them to potentially dangerous circumstances. While transgender women in their 30s are more likely to be mindful of risky procedures, younger trans women are more vulnerable.
The more risky procedures are linked to two other barriers to breast augmentation, as well: cost and insurance coverage. Some women simply don’t have the means for this major procedure and opt for injections of silicone or other substances directly into the body.
Part of the reason is the premium placed on “passing,” explained Fleming.
“Coming up in the community, if it didn’t look or feel right, that was something bad — not the health risk,” Fleming said. “That was the nature of the beast, and you went along with it and took your chances.”
According to a national transgender survey, nearly one in four respondents avoided seeing a doctor when they needed to for fear of being mistreated.
Leslie Monroy, a transgender woman living in Hollywood, Calif., had her textured gel implants for nearly 20 years before she experienced any issues. Then in February, symptoms like full-body chills, and inflammation, redness and itchiness around her breast concerned her enough to visit the Emergency Room.
After a mammogram and tests, doctors ruled out cancer as a potential diagnosis. But when symptoms worsened a few months later, Monroy spent a week in the hospital before a surgeon determined her implants were causing her symptoms and would need to be removed. She underwent explant surgery in June.
“I feel good because I’m healing,” Monroy told MedTruth, “but in the same way I feel bad because now I don’t look like myself.”
Now that she’s recovering, Monroy’s biggest issue is her insurance, which won’t cover surgery to replace her implants because it’s deemed cosmetic. She’s now pushing for recognition that this procedure is a treatment for her dysphoria.
This experience is familiar to many transgender individuals: The USTSreported that 55% of respondents who sought coverage for transition-related surgery in the past year were denied.
Such denials of affirming care are damaging to trans individuals, said Bamby Salcedo, president, and CEO of the advocacy group TransLatin@ Coalition.
Breast implants “are part of our identification. It’s part of our psyche,” she said. “Companies don’t see how we are impacted when we are trying to be who we are destined to be, yet we have all these social barriers that continue to say we’re not supposed to exist.”
As for Monroy, she’s in recovery but overwhelmed by the stress of her situation. She currently lives alone, away from her family who lives in Mexico. She’s worried about bills and surgery costs.
“I feel like I’m in the middle of a fight for everything,” she said.
“Companies don’t see how we are impacted when we are trying to be who we are destined to be, yet we have all these societal barriers that continue to say we’re not supposed to exist.”
— Bamby Salcedo
A 2019 article published in Transgender Health discusses transgender health justice and the framework for status quo disruption across the board. Similarly, including trans women’s experiences in the research and narrative around breast implant illness can increase awareness of intersecting structural causes of health inequities.
“Those same factors that play a role in every aspect in our society play a role in health care,” Bond, the public health professor, said. “When it comes to equity, we need to be more inclusive and that means being more trans aware, being aware of discriminations women face based on their gender and racial identity.”
Social media has helped to illuminate the realities of health care and health issues for both trans and cisgender women. BIA-ALCL survivor Fleming urges women to use it to raise awareness of breast implant illness and share the experiences of trans women.
“We all have to come together, cis and trans, and learn from each other’s cases,” Fleming said. “All roads lead to the answer because of what helped or hindered you can be somebody else’s savior. The more conversation between both communities will serve us all and help us all in this fight to have a full healthy existence.”
By Lauren Styx
Lauren Styx is a journalist and editor focused on elevating the well-being of women and the LGBTQ+ community. She is based in Brooklyn, New York.