A cancer screening crisis for transgender patients: Discrimination, patient unease, provider ignorance, and a highly gendered health care system are impeding cancer screening and risk assessment in the transgender population. In this article, the first of a 2-part series, we explore how clinicians can begin to address those barriers.

Abstract

Alarm bells had been ringing well before Canadian investigators published a small study in January that suggested that many transgender patients may be missing out on preventive cancer care, even in relatively welcoming environments. Nevertheless, the analysis, which assessed screening rates for 3 common cancers among 120 transgender patients, was among the first to try to quantify the problem. Researchers from St. Michael's Hospital in Toronto, Ontario, Canada, discovered that, within the hospital system, eligible transgender patients were approximately 70% less likely than cis-gender patients (meaning those whose gender identity matches the sex they were assigned at birth) to be screened for breast cancer, 60% less likely to be screened for cervical cancer, and 50% less likely to be screened for colorectal cancers.1 Among the contributing factors, some physicians neglected to recommend screening for patients whose gender had changed. In other instances, patients opted out of screening due to feelings of gender dissonance, such as discomfort with the Papanicolaou (Pap) test among some transgender men. A 2015 editorial in Lancet Oncology foreshadowed the study's results by raising concerns that cancer screening programs were regularly failing to identify eligible transgender individuals who “remain susceptible to cancers of reproductive organs that are no longer in alignment with their gender.”2 For example, a transgender woman still may be at risk of prostate cancer, whereas a transgender man still may be at risk of breast, ovarian, and cervical cancer. However, due to discrimination, patient unease, a lack of provider awareness, and other obstacles such as misgendering (when a transgender person is referred to in a way that does not reflect the gender with which they identify), those cancer screening messages often are never sent, received, or acted upon, with potentially disastrous results. Indeed, the 2015 US Transgender Survey of 28,000 individuals conducted by the National Center for Transgender Equality suggested that transgender individuals are less likely to receive preventive cancer care due to fear of harassment and discrimination. Approximately one-third of respondents who had seen a physician within the previous year reported at least 1 negative interaction that they perceived as being related to their gender identity. Advocates in the transgender community say the findings, although distressing, are not surprising. According to the deputy director of the National LGBT Cancer Network, Scout, PhD, MA (he uses only one name), a few key factors appear to be driving lower cancer screening rates. “One, providers are not even getting the reminders to treat the body parts that you have,” he says. Two, he continues, patients often are fearful of seeing a new clinician. “Whenever you have to get naked and disclose to a brand new provider, there's a huge amount of concern and resistance to it,” says Dr. Scout, who identifies as a trans man. “I, myself, had to go to a dermatologist but I was putting it off a lot,” he says. “And it wasn't until my partner was like, ‘No, you have to go and get this thing on your back checked out.’ It did end up being skin cancer.” Some providers have told him that they treat everybody the same. “And you can see from these examples how that actually fails for trans people,” Dr. Scout says. “If you're not putting out a flag of welcoming to trans people, then they're going to presume that you could be very discriminatory and bigoted, as much of the health care system has been in the past.” In addition, he says, “If you treat a trans guy the same as a cis guy, then you're not going to give him the screenings that his body needs.” Madeline Deutsch, MD, MPH, an associate professor of clinical family and community medicine at the University of California at San Francisco and medical director for the Transgender Care program at the University of California at San Francisco Medical Center, says transgender patients regularly report discomfort with pelvic examinations for cervical cancer screening and with colonoscopies. Similarly, breast cancer screening can be fraught for both transgender men and women, Dr. Deutsch says. “Transgender men can feel very uncomfortable because breast cancer screening is something that women undergo, and the whole process is very feminized,” she says. Transgender women, meanwhile, may be uncomfortable due to the potential for confusion about their gender presentation when they check in for a mammogram. Charlie Manzano, a transgender man and melanoma patient from Martinez, California, says breast clinics often are folded into women's health clinics and include highly gendered pamphlets, documents, and paperwork. Likewise, electronic health record systems can be less than accommodating. “As soon as I changed my gender to male at my hospital, I was told by a case worker that my gynecologist would be removed from my health care providers' list and I would then be assigned automatically—the system makes it so that I now get a proctologist and a men's health doctor,” Mr. Manzano says. He had to talk to a case manager to ensure that he could retain his gynecologist. “If you treat a trans guy the same as a cis guy, then you're not going to give him the screenings that his body needs.” — Scout, PhD, MA Ruddick, who identifies as nonbinary (a phrase used by some whose gender identity falls outside of the general categories of man or woman) and lives in Medford, Oregon, was diagnosed with ovarian cancer at the age of 18 years. Ruddick uses they/them pronouns and says physicians and other providers routinely stumble over them. “I have doctors that are very, very well-intentioned and they really want to be open to trans folks, but the problem is they just really don't know how,” Ruddick says. “They can accept me as a trans man and call me ‘he,’ but there's just a language barrier with gender-neutral stuff.” Although Ruddick has high praise for their gynecological oncologist, the medical office listed them as “male” in charts because it was the only alternative to “female.” Someone else in the office thought it was a mistake and changed it back. They have been listed as “male” by some physicians' offices, “female” by some, and “other” by some. How should physicians help to ensure that their transgender patients receive cancer screening? “First and foremost, developing a relationship with your patient that involves trust and that allows the patient to feel comfortable exposing very sensitive parts of their body to you is very important,” Dr. Deutsch says. For example, if a patient is overdue for a Pap test, physicians routinely tack it on to other visits. “But the problem is, often that means those things are rushed,” Dr. Deutsch says. To help put the patient at ease, especially if they are overdue because of past discomfort or discrimination, providers always can perform the test later. “Do it next time or do it in 6 months when you've developed a rapport with the patient,” she says. During the process itself, other techniques can aid patients' comfort levels. As part of research at Fenway Health, an LGBTQ health care, research, and advocacy organization in Boston, Dr. Deutsch helped to develop several approaches for relaxing the pelvic floor and engaging the patient. They include talking about the purpose and process of the examination, asking patients if they would like to see and insert the device themselves, and allowing them to choose different positions. The same general principles apply to anal Pap tests, she says, although the procedure is much less invasive. “So there's no rush, and there's a safe word that I give them, which is ‘Stop,’” she says. If a patient expresses discomfort at any point, she will immediately remove all of the equipment. Dr. Deutsch says none of her patients has yet used the safe word. “But I think setting up that dynamic puts the person in charge so that they have the agency to end the exam when they'd like to.” In other words, empowering transgender patients can help to ensure the successful completion of preventive care. Mr. Manzano and Ruddick say physicians can further help their transgender patients by asking more questions. “A lot of doctors are scared to ask questions, which is a huge problem,” Mr. Manzano says. Instead of shying away from saying certain words, he says, “asking what language we prefer is better than not saying it at all.” Being an ally to the underserved transgender community does not require undue effort, Dr. Scout says, yet it can make a huge difference given the cancer screening gaps, continued discrimination, and concern over potential government rollbacks to existing protections. “It's about time for it to end, and it doesn't take that much work to end it,” he says. “You don't have to be the expert; you just have to be someone who's willing to learn.”