Outside the margins: LGBTQ2 cancer patients can face big disparities in care, screening

Like many young people who receive a cancer diagnosis, when 34-year-old Selene Caister went to the emergency room with terrifying and unexplained symptoms, doctors sent her home and told her to come back if the issue persisted.

The pain and bleeding she experienced when she went to the bathroom did not abate, and Caister returned to the emergency room hoping that doctors would have a different answer for her. They didn’t.

“Basically it was the same thing that happens when you call tech support and they just have no freaking clue,” Caister, now 40, told Global News. “It was literally like a shrug and a wave.”

After months of emergency room doctors running blood tests, CT scans, doing physical examinations and then sending her home, Caister was still no closer to understanding her symptoms. It took a family doctor intervening on her behalf for the hospital to take her seriously.

Armed with a letter written by her family doctor demanding that the ER admit her, Caister walked back into the hospital. She would come out days later with a cancer diagnosis.

Up until that point, doctors hadn’t even considered that her symptoms were caused by cancer.

“Nobody even looked. I nearly died,” Caister said.

She had colon cancer and had to have a portion of her colon removed in a subtotal colectomy.

“Everyone kept saying ‘Oh, you’re so young,’” Caister added. “Sure I was younger, but… I was in my mid-30s. It’s not unheard of.”

Doctors caught Caister’s cancer early enough that she didn’t need chemotherapy, but she says the cancer was close enough to spreading that “one more bump from the emergency room and I could be dead right now.”

Caister emerged from the hospital with no more evidence of the disease in her body, but the true extent of her cancer ordeal was only just beginning.

Caister had spent three months in the hospital post-operation and in that time, her mind wandered. She knew something needed to change in her life. In a “life-flashing-before-your-eyes kind of way,” going through this gruelling experience helped Caister come out as transgender.

Cancer was by no means the only experience that led Caister to come out, but it did help kick-start her transition process and decision to start hormone replacement therapy (HRT).

For a period of three years after her cancer was gone, Caister couldn’t work due to disability, and later was simply unable to find work. She had been in the hospitality industry before the cancer diagnosis and her previous job involved being on her feet all day — something that was physically not possible for her anymore.

“I was basically put in a position where, after three months, no one would say I was sick enough to need any support, but I was at least a year out from it being safe to do anything close to what I’d done before,” Caister said.

This story is not uncommon with young cancer patients. Not only can cancer disrupt some of the most important years in a person’s career, but it can create obstacles to finding employment again once they’ve “beaten” cancer.

A 2009 global analysis of 36 studies, surveying 20,000 cancer survivors and over 150,000 control subjects, found that cancer survivors are 1.37 times more likely to be unemployed than their healthy counterparts.

About a third of all cancer patients surveyed were unemployed, compared to a 15.2 per cent unemployment rate for the control population. For gastrointestinal cancer survivors, like Caister, the unemployment rate jumps up to 48.8 per cent — nearly half. Increased risk of unemployment was also found in breast cancer survivors.

On top of all this, Caister had to grapple with being newly trans, a monumental mental, emotional and physical change.

While Caister was looking for work, she started to distance herself from the sex she was assigned at birth but hadn’t yet decided to do HRT.

“There was sort of some degree of like, being a cis male is not the correct answer, but it wasn’t so much like ‘I’m a woman’ at that point,” Caister described.

She recalls an incident where she got far along in the hiring process to join a company, only to not get the job offer in the end. At that point, she had been unemployed for years, and having this opportunity evaporate left Caister hopeless.

She remembers thinking, “I don’t feel like I have anything to lose at this point. So f–k it, let’s go for this.”

So she took the dive and went to an HRT info session. Caister started the formal process of hormone replacement on April 10, 2020 — a date that she recalled in her interview with Global News as quickly as if she had been asked her birthday.

Caister now works in technical consulting and her coworkers only know her as a woman, something she says feels “incredible.” While her story is extraordinary, she’s not alone in having a cancer diagnosis provide that extra push to start exploring one’s identity — particularly one’s gender identity.

Jacquie Gahagan is the associate vice-president of research for Mount Saint Vincent University in Nova Scotia and specializes in medical sociology. Gahagan, who uses they/them pronouns, was also a principal investigator of the Cancer’s Margins Project, a research team that explored the unique challenges faced by trans, non-binary and genderqueer people with “women’s cancers.”

The Cancer’s Margins Project conducted numerous interviews with LGBTQ2 cancer survivors, and Gahagan says a few of their participants decided to transition because of a breast cancer diagnosis.

One startling example was an older woman who identified as a non-binary butch lesbian who had hoped to get a double mastectomy (breast removal) as an elective surgery — and then they were diagnosed with breast cancer.

“This is not going to be an accurate quote,” Gahagan told Global News, “but the quote was something like, ‘Hooray, I have breast cancer! Now they have to take me seriously and now I can get top surgery.’ Pretty powerful.”

While heartbreaking, this reaction isn’t altogether surprising given the state of access to gender-affirming treatments and surgeries in Canada.

For many trans Canadians, accessing gender-affirming surgeries means waiting a year (and often more) on waitlists for clinics in big cities like Toronto and Montreal. Getting approval to be added to a waitlist also means having to collect letters of recommendation from psychiatrists or other health professionals, creating financial barriers, even more delays and the possibility of experiencing transphobia from someone in the health care system.

Gahagan says these barriers are sometimes sufficient for trans people to give up hope of ever receiving gender-affirming treatments.

“It’s just shocking to think that that’s how you qualify to get medical treatment. That if it was related to cancer, you get in the queue faster. If it’s related to having gender dysphoria, you go through another set of processes,” Gahagan said.

But queer breast cancer survivors who want to have their breasts removed must often jump through another hoop: many doctors automatically assume that they will want breast reconstruction surgery after mastectomy.

Kimiko Tobimatsu was diagnosed with breast cancer at age 25 and wrote about her experiences in a graphic novel called Kimiko Does Cancer. She documents her experiences as a queer woman feeling out of a place in the hyper-feminized world of the breast cancer space. Breast cancer is often gendered as a “woman’s cancer,” even though people of all genders can be diagnosed with it. (Yes, cis and trans men still have breast tissue, even those who’ve undergone mastectomies.)

Tobimatsu recalls discussing getting a mastectomy to treat her breast cancer and “the assumption was if I get one, I will get automatic reconstruction.”

“Of course, that’s a completely valid choice for folks,” Tobimatsu said. “But there’s many people, for gender-related reasons or others, that want to stay flat. And I think the medical profession needs to recognize that as a valid choice.”

“For myself, I even thought, ‘Oh, I might like the look of staying flat and it might fit with my gender presentation more,’ but that wasn’t entertained as part of the discussion,” she remembers.

“Those assumptions can be really harmful to people who are going through this process. You’re already making life-or-death decisions, and then to also not necessarily feel like you’re being seen, I think is a challenge,” Tobimatsu added.

Tobimatsu ended up not needing the mastectomy in the end, but Gahagan says they have encountered this same story of doctors pushing for non-medically required breast reconstruction surgery many times during the Cancer’s Margins Project.

“Having health care providers say, ‘You’re under a lot of stress, you’ll thank us afterwards, you’ll feel better, it’ll help reduce your stress,’ etc. Well, it doesn’t for individuals who actually feel that they are not being taken seriously or not being listened to,” Gahagan said.

While the onus is partially on doctors to listen to their patients and not make gendered assumptions about their treatment, there are also structural issues within the Canadian health care system that create undue stress for LGBTQ2 cancer survivors.

“The hospital is the one place guaranteed to constantly dead-name you, and not just do it once, but do it every five minutes,” Caister says. A dead-name is the name that a transgender or non-binary person used before transitioning.

“It’s part of their requirement — to make sure they don’t give the wrong procedure to the wrong person — to constantly be asking you for your personal information,” Caister said. “So literally every time I go to a hospital, it’s like the worst experience.”

Caister needs to go to the hospital a minimum of two times a year for regular CT scans to make sure her cancer hasn’t recurred. Because she started her cancer treatment as a man, for the rest of Caister’s life she may be misgendered and dead-named by medical staff.

“They do it every time you change rooms, every time you go to a new person. ‘Give me your name, give me your birthday, give me your name, give me your birthday, give me your name, give me your birthday.’ I’m in tears by the end of this.”

For Tobimatsu, simply seeing only the male and female checkboxes on medical forms can raise alarms.

“It’s an immediate trigger for folks reading who might not fit into that category. And even for myself, I identify as a woman, but when I see that, that’s a signal to me that this organization or this medical professional doesn’t have awareness of more diverse gender identities,” she said.

Making it easier for patients to change their names and genders on medical charts and the cancer registry is not being prioritized, Gahagan says, even though it would improve the data that Canada collects about cancer patients and would make the treatment process more comfortable and appropriate.

Gahagan also noted that a number of LGBTQ2 patients forego seeking treatment due to past bad experiences with health care, leading to later diagnoses and worse health outcomes.

The institution of cancer care was not built with LGBTQ2 people in mind, and they’re slipping through the cracks because of it. In particular, trans peoples’ experiences with cancer diagnoses reveal just how broken access to gender-affirming services are, and it showcases the abysmal support that cancer survivors receive once they leave the hospital.

One thing is clear: it’s time to rewrite the narrative of what a typical cancer survivor looks like.

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Against All Odds: Young Canadians & Cancer’ is a biweekly ongoing Global News series looking at the realities young adults face when they receive a cancer diagnosis.

Examining issues like institutional and familial support, medicine and accessibility, any roadblocks as well as positive developments in the space, the series shines a light on what it’s like to deal with the life-changing disease.