Patient joins research team to study how Black women experience breast reconstruction

CHICAGO – When Tokoya Williams, MD, found a lump in her breast, the 30-year-old medical student didn’t realize her breast cancer journey would help her find a new path in medicine. Her experience as a patient led her to Northwestern Medicine for care, and now she’s joined her own surgeon as part of a research team that is examining racial disparities related to breast reconstruction surgery.

Dr. Williams was planning for a career in cardiovascular surgery when physicians first recommended a double mastectomy to remove the cancerous tissue in her breasts. She began to research her reconstructive surgery options by speaking to colleagues and doing online searches. She turned to Google and social media, but rarely found what she was seeking: images of Black women who had undergone successful breast reconstruction.

“I was looking for information about the risks, and what was the likelihood of this reconstruction looking like a real pair of breasts,” Dr. Williams said. “I was looking for other Black women who had had breast reconstruction, and I was like, ‘what is this going to look like on my little brown body?’”

She chose to have reconstructive surgery, and her recovery delayed her graduation from medical school by a year. After graduation, Dr. Williams pursued additional training in surgery and completed a postdoctoral fellowship in burn surgery.

Through it all, she continued to receive care for complications from surgery, which eventually led her to the clinic of Robert Galiano, MD, a plastic surgeon and associate professor at Northwestern Memorial Hospital who has an interest in scarring, wound healing and breast reconstruction surgery. He listened to Dr. Williams’ concerns and described the options that would help her achieve the cosmetic outcomes she wanted with a minimal amount of scarring.

“As an African American woman, I scar and I form keloids,” Williams said. “As I looked for photos of other women’s successful surgeries, I didn’t feel like there was enough attention paid to the ways Black skin heals differently.”

By the time he began treating Dr. Williams, Dr. Galiano had already recognized that other patients were experiencing the same disappointment as they performed social media searches for patients who looked like themselves. He’d begun research that was demonstrating that Black women are less likely to be pictured in social media posts showing the outcomes of breast reconstruction. As he helped Dr. Williams recover from complex surgeries, they shared their concerns that the underrepresentation in social media may be contributing to the decreasing trend in Black patients who choose breast reconstruction after mastectomy. Since breast reconstruction can benefit a patient’s body image, self-esteem and overall well-being, the physicians resolved to address inequities in care.

“The more I learned as a patient, the more I began to be motivated to consider a new career path in plastic surgery,” Dr. Williams said. “I realized that I had never met a Black woman who was a plastic surgeon.”

As part of her plans to become a plastic surgeon who helps patients like herself, in January 2022 Dr. Williams joined Dr. Galiano’s team to perform research about racial disparities in breast reconstruction. She hopes her research and connections will lead to the next step in her career: a fellowship in plastic surgery.

“I still have never personally met a Black woman who performs breast reconstruction surgery,” Williams said. “It’s arduous to get a position, and it’s very exclusive. It’s been an uphill battle. It’s hard for people to imagine a Black woman as a plastic surgeon.”

It’s also hard, she said, for many Black women to understand that reconstructive surgery can be an essential part of recovery. She said education is needed to ensure patients know they are eligible for surgery, their insurance will cover it, and to eliminate the stigma about having plastic surgery. Her work with Dr. Galiano aims to influence communication aimed at Black women with cancer.

“Before I saw Dr. Galiano, my scarring was treated like, ‘This is what happens. You’re Black.’ I felt like I had to accept that this was as good as it’s going to get for me,” Dr. Williams said. “There didn’t seem to be a lot of care paid to giving women better outcomes or treating them like they’re important.”

Dr. Galiano said his team’s research revealed that although many plastic surgeons have embraced social media as a way of reaching new patients, only 6.7 percent of the analyzed photographs were of patients who were not white. Results from a random sample of the top plastic surgery social media influencers showed that only 5 percent of uploaded photographs were of nonwhite patients. Furthermore, 30 percent of surgeons did not have any photos of nonwhite patients as part of their social media presence.

“The disparity that was revealed by our study illustrates the need to promote Black patients’ inclusion in social media to make sure all women who desire breast reconstruction are aware they have access to this care,” Dr. Galiano said. “Several other studies have examined reasons that Black women may not pursue reconstruction at the same rates as white patients. We must do more to understand the needs of Black women with breast cancer. An enhanced social media presence may help women become more familiar with breast reconstruction, so they have more information about the options that are available to them.”

Dr. Williams hopes the team’s research will encourage other Black women to pursue their desired surgical outcomes. It all begins, she said, with developing trust and confidence between physicians and their patients.

“We need to see ourselves in medical roles and in the faces we see in advertising,” Dr. Williams said. “We need Black women to know that we care about their outcomes. Our team’s research will help us understand the disparities in breast reconstruction so we can help more women have access to the care they need. And when I become a plastic surgeon, my patients will know I understand what they’re going through and that I’m dedicated to providing them the results they want.”