The good, the bad and the ugly of cancer care for LGBT+ people: ‘When done badly, it’s devastating’

queer cancer care

Cancer care desperately needs to be more inclusive, an LGBT+ survivor has said, because “your life is in someone’s hands… and what if those hands are homophobic?”

Tatum de Roeck is a yoga teacher who was diagnosed with breast cancer at the age of 35, and who creates and hosts the podcast Not Your Grandma’s Cancer Show for Shine Cancer Support, the only UK charity that supports adults in their 20s, 30s and 40s who have experienced a cancer diagnosis.

De Roeck was diagnosed with cancer in 2011 while living in Los Angeles and moved back to London after receiving treatment, but she told PinkNews it took eight years for her to reflect on how her experience both in the UK and US might have been affected by her being queer.

“I remember for one particular doctor’s meeting, I brought my feistiest friend with me,” she said.

“You know, the friend that you wouldn’t want to cross. And it was so interesting – because of the situation, we both sort of lost our ability to advocate. Even when the doctor was saying things that were clearly out of line, neither of us said anything.”

Being able to advocate for themselves, and having people that can advocate for them, is one of the biggest issues LGBT+ people face in cancer care.

LGBT+ cancer patients, she explained, are often forced to consider whether to bring their partners to appointments: “If they say you’re friends, do you correct them?”

The endless assumptions and second-guessing can be especially draining for someone already going through a physically and emotionally difficult process.

For example, she said: “You go in for a scan, and they say, ‘Can you be pregnant?’ And maybe you only sleep with women.

“Or they see that you’re married, and you say, ‘No, I definitely can’t be pregnant.’ And they’re like, ‘But you’re married!’

“You know, you’re bald, and you’re itchy, and you don’t necessarily want to have to out yourself every few minutes to prove that you really, really can’t be pregnant. That can be draining, the assumptions.”

De Roeck added that assumptions are even made “about treatment options based on your sexuality, or the gender that they perceive you to be”.

“For example, someone who’s non-binary feeling pressured into [breast] reconstruction, when actually what they wanted was not to have it reconstructed and just wanted the other one removed so it was equal,” she said.

“Or lesbian being not being given fertility treatment, because of the assumption that their partner could carry the baby.”

“Your life is in someone’s hands,” she added. “And I think there’s a fear of what if those hands are homophobic? You kind of don’t want to p**s them off.”

Aside from medical care, accessing support can be a minefield for queer people with cancer

“I think it’s important not just to think about cancer care in terms of the medical setting, but also support groups,” said Tatum de Roeck.

She recalls being in support groups and listening to other “play the pronoun game”, trying desperately not to out themselves.

“That fracturing of sense of self, like not disclosing either their gender identity or their sexuality, then you can’t necessarily access the support,” she said. 

“You don’t feel comfortable enough to know that no matter what you say, that space is held and safe.” 

She continued: “I think it’s really important that people have the option to bring their whole selves, and bring it into the support, so that they can access all of it and not have to filter any part of themselves. I really, really think that can be vital.”

How can cancer care for LGBT+ folk be better?

This year, Tatum de Roeck hosting a “Queering with Cancer” panel at Shine Cancer Support’s annual conference, and she said: “I wanted to pose the question, ‘Can cancer care be more inclusive?'”

By exploring her own experience and others’, and understanding the good, the bad and the ugly of cancer care for LGBT+ folk, de Roeck believes that yes, it can.

“I was really lucky with my oncologist,” she said. “He was like, ‘My nurse is a lesbian.’ So I was like, ‘OK, safe zone.'”

But, she added: “When it’s done badly, it can be devastating.”

“My ideal setup would be that they had more questions that they asked, and more options for understanding,” said de Roeck.

“I think a lot of the assumptions could be headed off by questions.

“So, instead of presuming someone’s partner can carry the child, they would be like, ‘How do you feel? Do you feel like fertility treatment is important for you? How do you feel about the options for surgery?’

“Giving space for someone to respond to, I think that would be really big.”

“It’s a time where you just don’t have energy necessarily to be loud,” she added.

“So I would like, in an ideal world, for systems in place so even if someone is just at their lowest low, they don’t have to expend any more energy.

“Because they just they can bring whoever they want with them, and they can identify in any way.”