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2017-18 Issue V Cover Story Editors' Picks National

Blind Spots

On an April morning in 2016, Casey Sexton, a burly and tattooed 54-year-old with a brown goatee and blue eyes, was on his way to work, at a Jared Galleria of Jewelry branch in Madison, Wisconsin, when his doctor called with the biopsy results: stage IIIA breast cancer. “Well that sucks,” Sexton remembers replying. After the call with his doctor, and before he knew he would need three surgeries and eight rounds of chemotherapy, Sexton went to work for the day. “That’s kind of how I roll,” he told me over the phone with a chuckle.

Long before then, Sexton had accepted that, at some point, he would probably get lung cancer from smoking, or liver cancer from drinking. Breast cancer, though, was unthinkable, since Sexton didn’t have breasts anymore.

Five years earlier, in 2011, Sexton had undergone top surgery. He had been saving up for the procedure since 1999, when he started taking testosterone. (Sexton identifies as a transgender man.) It was not until 2010, when he won the jackpot at Madison’s Dejope Casino, that he had the 6,500 dollars he needed. The top surgery eliminated the breasts with which he was born, and with them—he assumed at the time—any risk of breast cancer. And so, four years later, when Sexton felt a lump in his chest, he suspected it was scar tissue from the surgery. For six months, he avoided the doctor’s office until the lump grew too big and too painful to ignore.

Now, Sexton wonders what might have been different had he visited a doctor earlier. By the time he did, the cancer had spread to more than 20 of his lymph nodes. “If I’d been diligent about it and got it checked out, it wouldn’t have been as severe as it was,” he said. “That was a dumb-ass move.” But Sexton’s doctors had never told him to get his chest checked out. Even they hadn’t known he should.

***

Transgender Americans suffer from a shortage of specified care and research in a medical system not designed to care for them. These patients carry a double burden: their medical diagnosis and obstacles related to their gender identity. In the most extreme cases, doctors refuse outright to treat transgender people. More common, however, are subtler complications. In every stage of accessing quality healthcare—from obtaining insurance to finding a competent doctor, from outing themselves in waiting rooms to having invasive exams—transgender patients face particular challenges.

Cancer is one of the highest risk diagnoses for transgender people with poor medical care. And “gendered” cancers—those associated with one biological sex, like breast and cervical cancer—especially increase the likelihood of discrimination or complication. Cases like Casey Sexton’s pose a new question for the medical community: What happens when transgender people are diagnosed with diseases—especially cancers—associated with the biological sex they’ve left behind?

Some transgender patients, like Sexton, see doctors who want to treat them but don’t have the proper training to do it; others see doctors who have studied all available information about transgender health, but are still limited by insufficient medical research. “There are blind spots upon blind spots,” said Juno Obedin-Maliver, Assistant Professor at University of California, San Francisco, Chief of Gynecology at San Francisco Veterans Affairs Medical Center, and the Co-Director of The PRIDE Study.

For Sexton, the biggest obstacle was a lack of information about his own health. Top surgery, which he underwent, is the most common of gender-affirming surgeries. In the procedure, doctors remove most—but not all—of the patient’s breast tissue, leaving enough to construct a cosmetically-masculine chest. By contrast, in a mastectomy—the goal of which is to prevent or treat breast cancer—doctors remove as much breast tissue as possible. With less breast tissue, the risk of breast cancer for people who transition from female to male decreases significantly, but it doesn’t disappear. “People should know it’s still possible,” Sexton said.

Sexton insists his doctors were supportive—“I think they felt bad for me”—but they were unable to properly advise him. They could, and should, have told him that breast cancer was still a possibility. How he should look out for it, though, is a question to which medical experts have different answers.

“Breast cancer screening guidelines are completely inadequate for transgender individuals right now,” said Mandi Pratt-Chapman, Associate Center Director of Patient-Centered Initiatives and Health Equity at George Washington University. Only one organization has published guidelines on breast cancer screening in transgender men: The World Professional Association for Transgender Health (WPATH) recommends transgender men be screened for breast cancer every two years. But a factsheet from the Center of Excellence for Transgender Health at the University of California San Francisco reads: “No reliable evidence exists to guide the screening of transgender men who have undergone mastectomy.”

Other considerations are psychological. As a procedure designed predominantly for women, mammography can be uncomfortable for people who have transitioned from female to male. “That’s a really big thing,” said AC Demidont, an infectious disease specialist who leads Anchor Health Initiative, an organization that serves New Haven’s LGBTQ community.

Transgender people might also fear the discrimination that seeking a mammogram could involve. “If they don’t ‘pass’—which I hate that word, by the way, ‘pass,’ because I certainly don’t pass,” said Demidont, who identifies as a transgender woman. “But if it’s evident to the person doing the exam that this person is trans, there could be a lot of perceived and real bias from a technician performing the exam.” Passing refers to a transgender person appearing to be, or “passing” as, a cisgender person, meaning someone who identifies with his or her biological sex.

To make matters more complicated, there is not enough research to confirm that mammography is the most effective method of screening for transgender men who have had top surgery. Transgender men’s chests post-surgery are different from cisgender women’s. A mammogram involves an x-ray machine that compresses the breast from above and below; without much breast tissue, the procedure can be painful, besides possibly being ineffective. (When Sexton had a mammogram after his diagnosis, “it hurt like crazy.”)

Lack of research on cancer in transgender populations is representative of a broader absence of data on gender minority health. The U.S. Census Bureau asks no questions related to gender identity, nor to sexual orientation. Those questions are also often not asked in less formal settings, like doctor’s offices and research studies. An estimated 1.4 million transgender people live in the U.S., based on a 2016 compilation, but that number is widely believed to be underreported.

Recent efforts, both on the public and private levels, have sought to remedy this problem. As part of an initiative called “Do Ask, Do Tell,” the National LGBT Health Education Center at the Fenway Institute in Boston recommended that all patients be asked their sexual orientation and gender identity on patient registration forms. Rather than two options—M and F—to describe their gender, patients at Fenway Health now have seven, including the option to state one’s own additional gender category. The next question on the form asks for the sex listed on the patient’s birth certificate:  “Male,” “Female,” or “Decline to Answer.”

Without data, doctors are sometimes left to assume transgender patients have the same risk factors, screening procedures, and treatment options as cisgender people. But both their physiology and external circumstances are different. Demidont noted, for example, that social determinants of health—homelessness, discrimination, mental health challenges, and in Sexton’s case, alcohol and tobacco use—all disproportionately affect transgender people.

As Obedin-Maliver said, “You can’t treat what you don’t know.”

***

When Liam Granger was a 21-year-old working at a K&W chain restaurant in North Carolina, he didn’t yet go by Liam. Back then, in 2008, he wasn’t out—even to himself—as transgender, but he felt increasingly disconnected from his female body, so much so that it was not until he visited his doctor (for unexplained stomach pain) that he realized he had not menstruated for eight months.

The doctors examined Granger and diagnosed him with stage IV level B cervical cancer, which meant the disease had spread to other parts of his body: liver, one kidney, intestines, and bladder. With every pelvic exam that followed, Granger recalls, he went into “dysphoric downfalls for days at a time,” the feeling of discordance between his gender identity as a transgender man and the biologically female disease for which he was being treated.

“I knew I had to have it done, so I had to push that down,” he says now of his discomfort with the exams. He needed them urgently: Granger’s doctor told him that if he hadn’t immediately received treatment, he wouldn’t have lived to see his 22nd birthday.

After eight months of treatment, Granger went into remission. But in early 2017, his cervical cancer returned. This time, Granger decided to come out to his doctor in the hopes that he might have recommendations for therapists or LGBT-friendly medical centers. Before his appointment, Granger googled “How to come out as trans to your medical provider.” The doctor would be one of the first people to whom he came out. After Granger said what he had rehearsed, the doctor was “short” with him. And for the first time, he didn’t shake Granger’s hand on his way out the door.

Later, when Granger called to make a new appointment, a receptionist informed him that his doctor had dropped him as a patient. The doctor’s reaction surprised Granger: “I thought he would be a little bit more medically professional about it,” he said.

“You focus on the disease but you also want to be respected,” Granger told me. “Even if you don’t want to call me my name, at least please take care of me.”

Since then, he has found a new and more accepting doctor, through a recommendation from a transgender friend online. Still, while continuing to undergo treatment and checkups, Granger receives confused reactions from people about his diagnosis. When Granger says he has cervical cancer, others sometimes ask, “Do you mean testicular cancer?”

“Gynecology” comes from the Greek gyne and logia; it means “the study of woman.” At the gynecologist’s office in North Carolina, Granger was not surprised to be surrounded by women. But they were surprised to see him.

During one visit to his OB/GYN’s office, in August 2017, Granger sat alone with an older woman—white, petite, and in her 70s—across the small room. The woman looked at Granger and approached the front desk. “Why is he here having an appointment at the OB/GYN?” she asked the receptionist, who “kinda giggled it off.” Granger didn’t respond; he didn’t want to cause any more of a scene. “I get looked at like I’m a freak of nature,” he said.

***

When Casey Sexton received his breast cancer diagnosis, his doctors advised that he consider halting his hormone therapy, because of its unknown cancer risks. For Sexton, those risks were worth it. He continued his testosterone therapy while receiving chemotherapy for breast cancer.

Like most areas of transgender health, the long-term effects of hormones on cancer risk are based on conjecture. According to one fact sheet from the UCSF transgender center, “it is unclear if testosterone therapy plays any role in HPV infections or cervical cancer” and “testosterone treatment does not seem to significantly increase the risk of breast cancer, but there’s not enough research to be certain.” Without sufficient funding, or a large sample size of transgender people on hormone therapy for an extended period of time, doctors assume potential risks of hormone use in cancer treatment.

The data that does exist on hormones is largely not sourced from studies of the transgender community. One established fact in more general scientific literature, for example, is that excess testosterone (which transgender men take if they undergo hormone replacement therapy) can convert to estrogen. In cisgender women—those who are born as, and identify as, female—estrogen has been shown to increase breast cancer risk. And so it is possible that the testosterone supplements transgender men take could convert to estrogen, which could potentially increase cancer risk. This makes screenings all the more important.

Liam Granger recalls his doctor telling him that “doing the hormone route was my choice, but there was not a guarantee I wouldn’t be diagnosed with another cancer down the line.” He wishes there were more research on the long-term effects of hormone therapy, but even without the data, his calculation was not difficult.

“If it’s gonna be like an every-ten-year diagnosis type thing, and I have to go through chemo and radiation to be who I am, I’m going to keep taking them,” he said. “I would rather—this is gonna sound really bad,” he paused. “But I would rather die happy than miserable.”

***

Van Bailey very quickly realized his new doctor hadn’t read his chart. The doctor, a primary care physician in Boston, assumed Bailey was a cisgender man. (In his official headshot online, Bailey wears a polka-dotted bow tie and has a shaved head, a beard, and a wide smile with a gap between his two front teeth.) His medical records, unopened in a folder the doctor carried with her, noted Bailey is transgender. Before the appointment began, during a few moments of small talk, the doctor asked Bailey what his job was; he was the director of LGBT student life at Harvard, he told her. “What’s ‘LGBT?’” the doctor asked. “Oh, God,” Bailey thought.

“The appointment went downhill from there,” Bailey recalled. He knew the doctor was trying to help; she frantically studied his medical records and looked up some information, but their twenty minutes together was not nearly enough time to both educate her and assess him. After that experience and others like it, Bailey avoided visiting the doctor as much as possible. “I have to do so much labor to make sure I’m not treated shitty,” he explained.

Bailey understands the physical repercussions of skipping doctor’s appointments. “It’s why I’m in the health state that I’m in now,” he said matter-of-factly. (Bailey’s hormone and liver levels are off, and his blood pressure is creeping higher.) “I just haven’t been to the doctor, and when I have gone it’s been really crappy.”

For some doctors, like Bailey’s, the problem is insufficient transgender health-related education, which has its roots in narrow medical school curricula. A 2011 study that Obedin-Maliver co-authored found that only 40 of 132 medical schools included any transgender health in their curricula. As a result, half of transgender patients reported having to educate their health care providers about their own health, in a 2010 study.

Education in treating transgender patients isn’t limited to medical knowledge. Cultural competency training opportunities are also few and far between. In 2015, the Fenway Institute of Health issued a report with recommendations to improve cervical screening of transgender men. Bailey agreed to participate, “because I wanted information on what’s going to be happening with getting paps and things like that,” he told me. His doctor hadn’t discussed with him whether he still needed the exams after transitioning from female to male. Unlike breast cancer, cervical cancer has unambiguous screening guidelines: Anyone with a cervix needs a pelvic exam. Most transgender men still have cervixes. Two thirds of transgender people do not have surgery to alter their gender at all. And if transgender men do, it will likely be top surgery; hysterectomies are less common.

Before transitioning, Bailey had already had dysphoria—the feeling of mismatch between gender identity and biological sex that Granger also felt during pelvic exams—while at the gynecologist, and was nervous to return.

The Fenway report recommends “describing cervical cancer screening as a non-gendered cancer screening procedure,” to make these necessary exams more comfortable for transgender people. For Bailey, thoughtful communication from his doctor was helpful. At the gynecologist’s office, Bailey’s new doctor discussed with him the need for pelvic exams, presented them as necessary for his health, and explained how he would be able to perform the procedure so that it was as comfortable as possible. “I loved the language that he used,” Bailey said.

Cultural competence measures are not important only for the sake of sensitivity; they could be lifesaving. As Bailey’s case testifies, the manner in which different doctors treat patients affects whether patients continue to seek out medical care.

In general, transgender men are much less likely to have pelvic exams than cisgender women are. A study published in 2017 found that half of transgender men surveyed had not had a pelvic exam in the past three years. What’s more, transgender men are ten times more likely than cisgender women to have medically sub-standard, cursory pelvic exams, according to a 2014 study. As a result, said Pratt-Chapman of George Washington hospital, “People are very likely unnecessarily dying of cervical cancer when it could be avoided.”

***

After he started treatment for breast cancer, Casey Sexton received a call from his insurance company. The chemotherapy would not be covered, because of administrative confusion: He was listed as male with his employer, but his medical records showed he had “female breast cancer.” To receive coverage, Sexton would have to change his gender back to female at work.“Yeah, it really sucked,” he said of the switch. He has high praise for his employer, Jared’s Jewelry, and fears what would happen if he had to switch jobs and explain his situation to a less understanding boss.

Liam Granger has taken a new job to help afford his treatment, while undergoing chemotherapy. Amid battles with his insurance company that included mailing his birth certificate and several letters from doctors explaining he was transgender, he briefly considered applying for the Affordable Care Act. The ACA not only covers most aspects of gender transition, including hormones and surgery, but also protects against gender discrimination, including against transgender patients. Just 17 states have laws that explicitly protect against insurance or Medicaid transgender discrimination.

In the end, Granger decided against applying for ACA coverage. Most of all, he was dubious that any federal policy under the Trump Administration could protect him. “With Trump’s stance on pulling trans people from the army, I was like, ‘This isn’t going to be any better,’” he said. Last summer, Granger read tweets from the president, in which he pledged to ban transgender people from the military.

Trump cited “tremendous medical costs” as the reason to prohibit transgender troops. But a study conducted in 2015 found that the cost of gender transition care would amount to an estimated 22 cents per military member per month, “little more than a rounding error in the military’s $47.8 billion annual health care budget,” according to the study’s author. Sexton began to fume when I asked him about the president’s statements. “These people are willing to die and you won’t let them serve because of who they are—what?”

In December 2017, the Trump Administration’s Department of Justice announced it would not appeal federal court rulings that challenged the ban. On January 1, 2018, openly transgender troops were permitted to enlist.

Several weeks later, the Trump Administration announced, through its Health and Human Services civil rights office, that it would protect health workers who refuse to treat transgender patients. They will have the power to object thanks to a new “Conscience and Religious Freedom” provision.

“This is when I don’t sound intelligent,” Sexton said while we discussed Trump. “I get so frustrated that I start to stutter. And I can’t believe that this is happening.”

***

Casey Sexton was shocked that I wanted to talk to him about his gender transition. When I first contacted him over Facebook, he responded with an emoji-filled (mostly the winking smiley face with a tongue sticking out) message: “I have to say ‘wow. Really’ I have never known anyone that has given a shit about that.”

Sexton feels lucky to have supportive doctors and a welcoming family. But none of them completely understands his situation, and he’s had trouble finding anyone else who does. Sexton knows very few transgender people. His doctors had heard of one transgender person in Colorado with the same diagnosis, but Sexton was uninterested in baring his soul to a stranger by phone. Sexton told me he has approached his cancer diagnosis with the same attitude he had when friends rejected him after his gender transition nearly twenty years ago.

In a situation like his, he said, “You’re kind of on your own.”

 

***

Correction, March 15: The print version of this article misstated Juno Obedin-Maliver’s title.

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