RESEARCHERS AT STANFORD UNIVERSITY in California found disparities in breast cancer outcomes between sex and gender minority (SGM) patients and cisgender women in a recent study of two California health systems.

The study, published Feb. 2, 2023, in JAMA Oncology, found transgender men as well as women who have sex with women waited longer for a breast cancer diagnosis after their symptoms began and were more likely to have cancer recur than their cisgender heterosexual counterparts.

While a significant body of scientific evidence now exists demonstrating racial, ethnic, and sex and gender disparities in cancer treatment, until now no studies looked at the quality of treatment and outcomes for SGM breast cancer patients. And while ample anecdotal evidence exists of SGM patients facing challenges in receiving care, including outright discrimination, there has been little objective data to back up those stories. The data gap led Erik Eckhert, a postdoctoral fellow in hematology and oncology at Stanford and the lead author of the study, to begin the research.

“If you don’t know where you stand with respect to the epidemiology, then you can’t identify a health care disparity,” he says. “And if you can’t see the health care disparity, you can’t fix it.”

The study looked at the medical records of 92 SGM breast cancer patients—74 lesbians, 12 bisexual women, and 6 transgender men—who were treated at Stanford University and Sutter Health in Northern California from 2008 through 2021. Each SGM patient was matched with a cisgender, heterosexual patient of the same age, diagnosis, cancer type and stage, socioeconomic status, and insurance type.

“One of the strengths of our study is that we matched on tumor biology and the cohorts were fairly well balanced,” Eckhert says.

Despite the similarities between the two groups of patients, SGM patients’ median time from onset of symptoms to getting a cancer diagnosis was 64 days, while the median wait time was 34 days for cisgender patients. Once diagnosed, SGM patients received treatment just as quickly as cisgender patients.

But after treatment, SGM patients were three times as likely to see their breast cancer recur compared to cisgender patients, an outcome that may be related to another difference the researchers found—38% of SGM patients declined a recommended treatment, whereas 20% of cisgender patients declined. And while SGM patients did have slightly higher risk factors, such as higher rates of substance use, “These small differences in risk factors do not explain the magnitude of the difference in recurrence rates,” the researchers write in the paper. “In the absence of a clear biological rationale for this difference in outcomes, the reasons for it appear to be associated with structural or social factors.”

Those findings are hardly a surprise to Scout, the executive director of the National LGBT Cancer Network, a nonprofit which works to educate both health care providers and SGM patients about cancer treatment for the LGBTQ+ population.

“I’m a trans nonbinary person, and it took me a long time to build up the positive relationship I have with my primary care provider,” Scout says. “Whenever she has to refer me to anybody else, the honest truth is I find anything to do that day but pursue that screening. Because I don’t know if I’m going to be disrespected or endure some kind of indignity.”

It sometimes only takes one bad experience to derail a person’s treatment plan, according to Mitchell Lunn, a Stanford physician who was not involved in the study but co-directs the PRIDE Study, a longitudinal health study of more than 24,000 SGM people. A transgender person who is misgendered while checking in at a treatment center may skip that appointment or look for another provider, Lunn says, and many primary care providers across the country do not have the training to properly care for SGM patients.

“There’s a lot of myths. For example, that if lesbian women haven’t had sex with a man, or haven’t had sex with a man recently, they don’t need Pap smears [a screening test for cervical cancer],” he says. “If you have an organ that can get cancer, and there’s a screening test for that, the current recommendations are that screening happens regardless of your sexual orientation or gender identity.”

Such persistent myths are not helped by the paucity of studies on SGM populations, which in turn results from a lack of available data. Many large cancer studies rely on large databases of patient treatment records and outcomes, such as the California Cancer Registry. But the registry historically has not recorded Sexual Orientation and Gender Identity (SOGI) data, and not all medical centers ask for it either.

“The lack of SOGI data in electronic health records is, I think, one of the largest barriers to looking at LGBTQ+ health disparities,” Lunn says, and is particularly important for understanding the health of different SGM patients. “The LGBTQ+ umbrella is a giant umbrella, and the experiences of me as a cisgender gay man are very, very different from [those] of a bisexual woman, which are very different from somebody else.”

But collecting SOGI data can be sensitive. Even as a number of cancer centers across the U.S. begin asking patients for SOGI data, it’s important that they first earn the trust of SGM patients, according to Scout.

“You’re asking for us to disclose vulnerable information, and until you assure us that we’re safe, there is no reason that we should think that we can trust you,” Scout says. “The steps to show assurance that we’re safe are not really complicated. Train your staff to put up some rainbow flags. We see restaurants do this all the time.”

In the meantime, Eckhert plans to follow up this study by replicating it using different hospital systems to see how well the findings generalize to other regions. “I definitely hear from other colleagues and other cancer centers that they are seeing similar disparities in care across several cancer types, actually, for LGBT patients,” he says.

And while researchers work to provide more hard data, Eckhert says that despite the real challenges faced by SGM patients in cancer care, staying engaged is the best way to safeguard their health.

“No matter what your experience in the health care system, you have to be your own advocate, and disengaging from health care is never the answer,” he says. “It’s your health, and you have to make sure that you are asking questions, making sure that you fully understand treating oncologist recommendations.”

Jon Kelvey is a freelance writer covering health and science. He lives in Maryland.