(NEW YORK) — Receiving a cancer diagnosis can be scary and life-altering. It takes strength to navigate the world following a diagnosis, so any additional barriers to this process can be tough, such as for transgender patients.
Although the world of medicine largely remains a cisgendered world, the landscape is changing to include more research, advocacy and education about transgender patients.
A good medical team can make all the difference for transgender or gender-nonconforming patients recently diagnosed with cancer. This was the case for Jen, whose last name ABC News is withholding for privacy reasons. Jen is transgender, identifies as nonbinary — though they lean more masculine — and prefers the pronouns “he/him” or “they/them.” Last year, they were diagnosed with cervical cancer.
“We started with the regular [gynecology] appointment, which turned into an ER visit, which then turned into two days later becoming a [cancer] patient at Moffitt [Cancer Center in Tampa, Florida],” Jen said.
The information on cancer in the transgender population is limited, but the knowledge gap is gradually decreasing thanks to researchers like Ulrike Boehmer, a Ph.D. at Boston University School of Public Health.
“I’m particularly interested in cancer and what it means for the transgender individual to go through that cancer survivorship experience,” Boehmer said.
Transgender people might navigate their diagnosis differently than a cisgender person, Boehmer said. They might experience discrimination, or need help coping with the diagnosis of a cancer type that’s typically associated with a gender that doesn’t match their identity.
“One of the first people I worked with was a man with ovarian cancer, we’re talking 2003, this is a long time ago,” said Dr. Don Dizon, a medical oncologist and director of the pelvic malignancies program at Brown University Lifespan Cancer Institute.
Today, Dizon works to spread awareness that some men can get cervical and ovarian cancer, and some women can get prostate cancer.
“Everything out there about ovarian cancer is about women with ovarian cancer; it’s very female-centric. But why can’t we just say, ‘If you were born with ovaries, you can get ovarian cancer?'” said Dizon, who added awareness has been improving, especially in the past few years.
“It actually didn’t throw me off with my identity,” Jen said of being diagnosed with a “women’s cancer.” “This is who I am, you know, physically, so it didn’t really throw me off knowing that of all the diagnoses, it was cervical cancer.”
Meanwhile, researchers like Boehmer have focused on whether transgender and gender-nonconforming people experience discrimination when seeking cancer care. Across the health care industry, nearly 1 in 5 transgender or gender-nonconforming people say they have been denied medical care outright because of their gender identity, according to a study by the nonprofit National LGBTQ Task Force.
When Boehmer looked specifically at disparities in cancer care, her findings surprised her.
“Given the tremendous discrimination and very hostile environment in which transgender individuals live, I assumed we would find even greater disparities than we did,” Boehmer said, describing results published in the medical journal Cancer.
Jen said the process of receiving their care was much smoother than they had anticipated. Over the years, they recalled noticing a gradual shift toward acceptance within the medical community, and that for the most part being transgender was not the focus, rather their well-being.
Jen was set up with a medical team that included medical oncologists, radiation oncologists, surgical oncologists and even an endocrinologist to help navigate hormonal issues that were sure to arise during their treatment.
“The good thing is that it was stage one, borderline stage two, just because of the size of the mass,” Jen said. “So highly treatable. I’ll have no issues recovering. I’m doing very well right now.”
Jen’s situation was relatively smooth because they have insurance, a job and stable housing. However, Jen said they didn’t seek regular cervical cancer screenings for three years prior to their diagnosis because of a change in jobs and insurance, and the overwhelming thought of finding a new doctor who would understand them.
Although Boehmer was surprised by some of the findings in her research, she is concerned about bias in the sample population. The research depended heavily on being able to identify and get in touch with transgender individuals, which excludes those who might be outside of the health care system or disenfranchised in other ways, such as by a lack of housing.
“There are a lot of issues around appropriate [cancer] screening of transgender individuals, and the lack of training of providers,” Boehmer said.
The medical community is trying to respond by better educating current and future physicians.
“The big barrier right now is that we (LQBTQ+) don’t find ourselves in the data being collected. But with more people speaking up, things are changing,” Dizon said. “This is why diversity and diverse people coming into medicine and oncology is so important.”
“More national attention can be called toward transgender issues to establish its importance in the medical community,” said Dr. Danielle Weitzer, a psychiatrist at Rowan University School of Osteopathic Medicine.
Weitzer, who is also transgender, said there are specific steps clinics can take to make their transgender patients feel welcome.
“Clinics can have specific anti-discrimination policies on their public website,” Weitzer said. “In addition to this, the website can establish specific services that are related to transgender care. This will give potential patients the comfort that a particular clinic has experience and expertise when dealing with the transgender population.”
Boehmer added, members of the medical field should be “listening very closely to their patients, understanding what their patients are telling them about their life, who they are and what they bring to this medical encounter.”
For patients in a similar situation, Jen said, “People really show up for you when you’re having to fight cancer — even people you don’t know, strangers, and across the globe, across the internet. You’re not alone.”
Onyema Okolo, M.D., a medical oncologist and hematologist from the University of Arizona Cancer Center in Tucson, is a contributor to the ABC News Medical Unit.
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