Young LGBTQI+ people more distressed when seeking cancer treatment due to discrimination fears

Young LGBTQI+ people more distressed when seeking cancer treatment due to discrimination fears

Young LGBTQI+ people with cancer experience significantly higher stress levels during their care and fear revealing their sexuality may lead to them being treated differently, research has revealed.

Adolescents and young adults are less likely to disclose their LGBTQI+ identity to healthcare professionals than older adults, researchers told a global cancer conference hosted by the Teenage Cancer Trust, looking at what can be done to strive to improve care for young cancer patients worldwide.

Many young people fear their LGBTQI+ status could lead to healthcare professionals treating them differently during their care, researchers discovered.

It also found younger LGBTQI+ people have higher distress levels than older LGBTQI+ adults and non-LGBTQI+ adolescents and young adults.

This makes young LGBTQI+ people less likely to disclose their identity to healthcare professionals than older adults.

Young Lgbtqi+ People With Cancer Experience Significantly Higher Stress Levels During Their Care And Fear Revealing Their Sexuality May Lead To Them Being Treated Differently, Research Has Shown (Photo: Getty)

The study titled: Out with cancer: Experiences of young LGBTQI+ people diagnosed with cancer, was highlighted by Professor Jane Ussher at the conference where international cancer experts shared the latest advances in research, treatment and recovery for teenage and young adult cancer care.

Ellen, 36, a lesbian woman with uterine cancer told researchers it was like “walking through a tunnel.”

“In this tunnel, it’s mostly safe, but it’s like walking in an area that has landmines. You can walk through fine for most of the time and most of the people you will meet will be professional and inclusive.

“But you are always cautious. You don’t know if you are going to step on a landmine. So you have to walk gingerly.

“This is what it means to navigate the health system as a lesbian woman.”

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Dylan, 32, a gay non-binary person with leukaemia, told researchers: “Doctors assume – they don’t tend to ask. So you’re constantly having to decide whether it’s worth disclosing to this person and whether that cost-benefit ratio of how much privacy you have to give up for your care is actually going to pay off.”

Young LGBTQI+ patients also disclosed they are often fearful as they anticipate negative reactions. Oscar, 27, a gay man with lymphoma, said: “I don’t want them to know I’m gay because I don’t want them to treat me different. If they realise I’m gay… if they’re religious, are they going to have less motivation to treat me, cure me?”

The study found 44 per cent of adolescent and young adult LGBTQI+ cancer patients said they had experienced discrimination of some form during their treatment.

Some young people reported that their partners had been treated differently or excluded from discussions because of their LGBTQI+ status.

One person revealed: “A nurse once asked if my partner was my friend or my sister. I wanted to pull my IV out and spray her with it.”

The research had 430 LGBTQI+ people with cancer who responded to a survey and 95 of them were adolescents and young adults.

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Dr. Louise Soanes, chief nurse at Teenage Cancer Trust, said: “Adolescent and young adult cancer services have progressed enormously over the last 30 years, but despite this, cancer is a leading cause of death for children and adolescents, particularly in high-income countries.

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“Through collaboration and the sharing of best practice, Global Congress provides real opportunity to build on the success of the last 30 years and improve the lives and life chances of young people with cancer in communities around the world.”

‘When you have cancer, you should be focused on getting better – not worrying about your sexual identity having a bearing’

Jamie Dods, Who Was Diagnosed With Hodgkin Lymphoma While On A Gap Year In Australia. He Feels Saddened By The Experiences Of Some Lgbtqi+ Young People When It Comes To Cancer Care And How Some Have Fears About Disclosing Their Status To Healthcare Professionals As They Feel They Might Be Discriminated Against (Photo: Jamie Dods Via Lauren Snaith, Teenage Cancer Trust)

Jamie Dods had finished a law degree and embarked to Australia for a gap year. When he began experiencing flu-like symptoms and felt achy and lethargic, he put it down to the stress of working hard to save for the trip.

“Looking back, I’d had my symptoms for five or six months, but it’s easy to dismiss them and put them down to other things,” he told i,

“One of my symptoms was intense itching, but I’d got a new dog and thought maybe I had an allergy.”

After some stays in hotels in Australia, Jamie went to his aunt’s house in Sydney and things became progressively worse. The itching had become unbearable and he was experiencing night sweats. “I was trying to get a job, but the itching was so bad, I could not even put a tight shirt on,” recalls Jamie.

“I eventually went to the doctors in Australia. It took several visits and I even got told I might be allergic to the hot climate in the country.”

Jamie saw a different doctor and was sent for an X-ray which found a 10.2cm mass in his chest. After biopsies and scans, he was diagnosed with Hodgkin lymphoma in October 2019.

He began treatment in Australia but flew home after one month for chemotherapy which he needed for six months.

Jamie says that while his overall experience of care was good and he didn’t have any fears about being discriminated against because of his sexuality, he remembers feeling initally stigmatised upon diagnosis as he was asked what his sexual identity was on a form and soon after , he was asked to have an HIV test.

Jamie Dods (Photo: Lauren Snaith/Teenage Cancer Trust)

“I did wonder if they’d only asked for an HIV test because I’d ticked the LGBTQI+ box – but I later found out they did an HIV test with everyone,” says Jamie.

“When I was going to be given my results, the doctor asked if I was sure I wanted to have my aunt in the room so I thought: ‘Oh gosh, does this mean I have HIV?’ But they told me the tests had shown the mass was malignant.”

Jamie had a positive experience during his cancer treatment and was supported by Teenage Cancer Trust’s youth coordinator who introduced him to other young people with cancer and he says this stopped him from “becoming a hermit.”

He is now doing well and approaching two years since completing his treatment. He tells i he is saddened by the experiences of some LGBTQI+ young people and their fears about disclosing their status to healthcare professionals.

“These statistics are really sad,” he says. “People should be able to focus on getting better and getting the treatment they need – not worrying about their sexual identity having a bearing on things.

“It is heartbreaking that some LGBTQI+ young people are having this experience.”


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