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Improving cancer care for sexually and gender diverse people

Introduction by Croakey: An urgent need for medical radiation services to provide more inclusive care for sexually and gender diverse people will be discussed at this week’s Australian Society of Medical Imaging and Radiation Therapy (ASMIRTconference, Marie McInerney reports.

The focus follows the publication earlier this year of LGBTQI+ People and Cancer: A guide for people with cancer, their families and friends, the first of its kind in Australia.

#ASMIRT2023, the national conference for radiographers, radiation therapists and the wider medical radiation sciences community, will open on Thursday in Sydney, with a four day program of workshops and conference sessions under the theme: Champions of Change: honouring the past, embracing the present, shaping the future.

See the full program here. It will feature a host of international and national speakers who are leaders in advanced practice, research, artificial intelligence (AI) issues and more, with a big focus on patient-centred care, as well as critical workforce and clinical issues and advances for the profession.

See our preview and bookmark the Croakey Conference News Service coverage here.

You can also follow the conference hashtag #ASMIRT2023, link to our conference Twitter List and follow @ASMIRTorg at our rotated Twitter account @WePublicHealth. We will also be live tweeting the conference: follow Marie McInerney at @CroakeyNews and @alisonsbarrett.


Marie McInerney writes:

In a research article emerging from her doctorate, leading Canadian radiation therapist, educator and researcher Dr Amanda Bolderston describes meeting a gay patient who had late-stage lung cancer and “was in a bad way”.

The patient was with his radiation oncologist, who, as she left, hugged him and his partner, handed over her business card and told him to call her anytime.

In the Radiography article, Bolderston, who remained after the oncologist’s farewell, describes how their patient started crying, which she assumed was because of his poor prognosis.

I pulled up a little stool on wheels and touched his hand. “That was a shock was it?” I said. “No”, he told me, “I knew what was coming”. Turned out, he was crying because Dr. B was the first doctor to treat him and his partner like a couple. They’d been mostly met with awkwardness and embarrassment, with a sprinkle of overt homophobia.

His partner leaned forward, “they’d have found this a lot sooner if they hadn’t assumed he had AIDS”. It had taken a number of negative blood tests, and lots of pushing to get them to look for other reasons for the weight loss and cough.

Did they tell me all this because of my pink triangle pin? I don’t know. I cried on the bus on the way home, I wasn’t sure if it was sadness or fury.”

Bolderston will deliver two presentations emerging from her research at this week’s conference of the Australian Society of Medical Imaging and Radiation Therapy (#ASMIRT2023), in sessions focused diversity, equity and inclusivity in medical radiation sciences and patient centred care.

In those sessions, she will showcase Queering Cancer, a website she co-founded for LGBTQ2S+ (Lesbian, Gay, Bisexual, Transgender, Queer or Questioning, and Two-Spirit) patients affected by cancer and their loved ones and will report on her findings about LGBTQ2S+ medical radiation professionals in a session titled, Coming out or staying in? Navigating diverse sexual and gender identities at work.

(Two-Spirit refers to a person in Canada who identifies as having both a masculine and a feminine spirit, and is used by some Indigenous people to describe their sexual, gender and/or spiritual identity.)

Bolderston will also be part of a conference panel session on women in leadership in the progression, along with Dr Jessica Biles and Angela Damm who will also present on the Deadly Aboriginal and Torres Strait Islander Nursing and Midwifery Mentoring (DANMM) Program. Also on the panel will be UK radiography researcher and academic Dr Christina Malamateniou and Sydney radiation oncologist Dr Lucinda Morris, who will also present on “’They Are Not That Smart!’: Leadership Lessons from The Bunker’.

Speaking to Croakey ahead of the conference, Bolderston said she will be urging greater awareness and education in the medical radiation sciences about the issues faced by LGBTQ2S+ patients and colleagues, who so often have to rely on genuine interest and goodwill rather than mandated education and training, and truly inclusive systems and workplaces.

Dr Amanda Bolderston. Photo by author

Building stronger connections

At the beginning of the Radiography article, Bolderston positions herself as a cisgender radiation therapist and a lesbian who had felt for some time in her clinical practice that her sexual orientation should be hidden.

“This concerned me,” she wrote, “because I felt it was (and is) an important part of who I am. I sometimes cared for patients who were gay or lesbian, and I felt a connection with them. I could see that occasionally they were treated differently, or they were also covering up who they were. The few times I did come out to patients, I felt that our connection helped them to cope a little better.”

Her declaration is important to the autoethnographic approach she takes to the research. But it also underlines her research findings that queer people have to ‘come out’ over and over again, in “a continuous and contextual process” over the course of their lives — while never being sure what the reception or impact will be.

That includes in their everyday working lives if they believe, as she does, that it improves their patient-centred care and their own satisfaction at work in not having to leave their identity at the door, “being able to be their authentic self”.

Bolderston says that what often gets in the way of coming out for health professionals, apart from institutional bias, is a misguided sense of professionalism, particularly in the medical environment where the idea of “a professional” is still a white cisgendered man who can do the “heteronormative small talk” that oils so many encounters, she said.

“But people who are queer, quite often we hold ourselves back from that, because we’re not sure about the reaction from the patient, we don’t want to — quote unquote — offend anybody, or we don’t want a negative reaction,” she said, adding that often queer professionals will also think “‘well it’s not about me, it’s about the patient’, which it absolutely is”.

Everyone is not the same

Bolderston says discussions about better care for LGBTQ2S+ people often get stuck when mainstream health professionals insist on an objectivity narrative.

Often when she mentions her doctoral work, they will tell her “it doesn’t matter to me if my patient is gay, I treat everyone the same”.

But there’s the critical rub, she says, “because everyone isn’t the same and we’re not practising person-centred care if we act like they are”.

As the case of Bolderston’s lung cancer patient shows, there are multi-layered implications of non-inclusive health care for LGBTQ2S+ people, ranging from not feeling welcome or respected through to significant medical repercussions.

Bolderston highlights the work of the Out with Cancer study in Australia, which says LGBTQIA+ communities represent an “ignored epidemic” and a “growing and medically underserved population” in cancer care.

The Western Sydney University study was born from research showing that LGBTQIA+ communities experience a disproportionate cancer burden, and face unique psychosocial challenges, such as higher rates of cancer related distress and sexual concerns, lower levels of family support, difficulties in accessing general health care or cancer services, gaps in patient provider communication and lower satisfaction with cancer care.

Out with Cancer led earlier this year to the publication of a landmark 80-page publication by Cancer Council NSW, LGBTQI+ People and Cancer: A guide for people with cancer, their families and friends, the first of its kind in Australia.

It outlines unique challenges faced by LGBTQIA+ people including:

  • health professionals making assumptions about your sexual orientation, gender and sex characteristics, which can make you feel invisible
  • anxiety about coming out as LGBTQIA+ and fear of negative reactions from health professionals
  • higher levels of depression and anxiety because of a history of marginalisation, violence, stigma, exclusion and discrimination
  • difficulty having your partner/s or other significant people recognised as your family
  • less or no support from your family of origin
  • little or no LGBTQIA+ specific cancer information or support
  • lack of knowledge among health professionals about issues specific to LGBTQIA+ people.

Medical repercussions

A cancer diagnosis is fraught with difficulties for anyone, Bolderston said, but for LGBTQ2S+ patients the “stakes are higher” when they come into an environment that is not welcoming or has no understanding of their lives or health needs. That can start with an intake form that “doesn’t recognise them or their partnership or their gender identity or their name”, that means they have to come out to the reception, and then in multiple other interactions as their journey progresses.

Queer patients are often diagnosed late because they may have had bad experiences in healthcare, “so they don’t necessarily trust the healthcare system or may just assume that they’re going to have a hard time, so they may delay seeking medical care”, she told Croakey.

They can also struggle with the way that cancer is often divided up as ‘men’s’ and ‘women’s’ diseases; for example, where breast cancer promotion and treatment is “aggressively pink”, with images of women everywhere in the mammogram spaces and, in some imaging services, women’s only changing rooms.

“So if you’re a trans man and you go for screening for breast cancer, you’re not going to feel welcome,” she said.

The medical repercussions can be significant, Bolderston says, citing her own example of asking her doctor once about cervical screening.

“She responded, ‘well you don’t need it because you’re a lesbian’, and I had to say, ‘I do need it because in the past I had sex with men so I can have HPV’,” Bolderston said. “These are the sorts of thing where healthcare professionals might miss cues and screenings.”

She talks also about the experience of a colleague at Queering Cancer: a trans man with ovarian cancer who encountered major barriers accessing CA125 blood screening tests for recurrence.

Community lab staff assumed his physician made a mistake ordering the test. Once he explained his gender and cancer history, they proceeded with the lab draw. However, when he went to check test results online, he was met with an auto-generated announcement that the test was cancelled as it wasn’t available for males.

With the support of local lab managers he has recently been successful in having all gender restrictions lifted for CA125 tests in his Canadian province.

But Bolderston said “he shouldn’t have to advocate like that for himself”, adding that trans and non-binary people “tend to just get worse experiences across the board”.

Queering Cancer website. Photo supplied

Address the deficit

Bolderston said her message at #ASMIRT23 will be for non-queer colleagues to educate themselves but also to advocate to make the system better in their own workplace or organisation.

“Learn what your processes are, do a scan and make sure that the place is physically welcoming and that your policies and processes are welcoming and accessible,” she said.

While Queering Cancer is designed for patients, she’s been buoyed by the interest from health professionals, who have made many requests for information, revealing a “huge deficit in education”.

That deficit can be seen in the lack of undergraduate education provided — she led a study on the Radiation Therapy Program (RADTH) she teaches at the University of Alberta, which found that LGBTQ2S+ and healthcare education amounted to a total of 3.5 hours in a three-year course.

But, as has been experienced by Indigenous peoples and people of colour across the world, the deficit is also in the way LGBTQ2S+ issues are taught, too often looking at problems rather than strengths, such as talking about gender dysphoria but not gender euphoria, she told Croakey.

As the editor of the international Journal of Medical Imaging and Radiation Sciences, Bolderston is also seeking to open up research to more diverse information and voices, including through narratives subject to a “much friendlier” process than double blinded peer review.

Under her leaders