The unique needs of LGBTQ cancer patients are still poorly understood

Despite lacking scientific evidence on how to tailor cancer prevention and treatment to this community, three out of four oncologists want to expand their knowledge to better assist LGBTQ patients, as an ESMO-SIOPE survey reveals 

LGBTQ_gender

The LGBTQ (lesbian, gay, bisexual, transsexual and queer/questioning) community comprises diverse groups of individuals with distinct healthcare needs. Though scarce, evidence on the cancer burden within these groups suggests the existence of disparities in disease risk and outcomes (Cancer 2011 August 15;117(16):3796-3804) while personal experiences of discrimination within healthcare systems have been reported by as many as one in 10 LGBT Europeans (European Union Agency for Fundamental Rights). Some argue that although more research is needed to understand the epidemiology, prevention and treatment of cancer in LGBTQ populations, simple changes in oncology professionals’ training and practice could help to start improving their care today.

We need to adjust to the needs of each individual patient, but unfortunately oncologists are ill-prepared to do so when it comes to sexual and gender minorities.

Dr Emmanouil Saloustros, ESMO/SIOPE AYA Working Group

A gap in medical knowledge and research

It is estimated that around 5% of Europeans identify themselves as lesbian, gay, bisexual or transgender. “We are talking about a small minority of the population, but this is what medicine is: we need to adjust to the needs of each individual patient, and unfortunately oncologists are ill-prepared to do so when it comes to sexual and gender minorities,” says Dr Emmanouil Saloustros, Chair of the ESMO/SIOPE Adolescents and Young Adults (AYA) Working Group and co-author of a survey exploring oncologists’ attitudes and knowledge about LGBTQ people with cancer (Ann Oncol. 2021 September 1;35(S5):S1236). With responses received from 672 medical oncologists, paediatric oncologists and surgeons across 75 countries, the survey is the largest and first international research effort on this topic to date, bringing to light that up to three quarters of participating oncologists currently consider themselves poorly informed about LGBTQ patients’ health issues and psychosocial needs.

“These results are in line with those of previous studies in the USA (J Clin Oncol. 2019;37(7):547-558) and the UK (ESMO Open 2020;5(6):e000906),” says Saloustros. “Still, I was pleasantly surprised by my colleagues’ widespread interest (73%) in receiving further education in this area. My hope now is that the ESMO community will start an open discussion about the unique challenges faced by this demographic group, which the ESMO/SIOPE AYA Working Group took an interest in not because there is a link between being young and identifying as LGBTQ, but because we serve patients at an age when they are typically confirming their sexual orientation and gender identity.”

Systematic data collection is the first and most important thing we need to start doing, considering that the LGBTQ population frequently has some cancer risk factors.

Liz Margolies, LGBT National Cancer Network

Noting that efforts are underway to make education on this subject accessible, Saloustros points to the larger problem that research on cancer incidence, care as well as unique psychosocial and health-related needs within the LGBTQ population is still limited. According to Liz Margolies, Founder of the LGBT National Cancer Network in the USA, this is mainly due to the fact that sexual orientation and gender identity (SOGI) data is not routinely collected on hospital intake forms or in national cancer registries: “Systematic data collection is the first and most important thing we need to start doing, considering that these groups more frequently have cancer risk factors such as tobacco use, alcohol consumption or being overweight, but also use of tanning beds as a melanoma risk among gay men and not having a biological child before the age of 30 as a breast cancer risk for lesbians,” she says.

Patients need to feel understood by their medical team

As an advocate and cultural competence educator, Margolies encourages hospital systems and oncologists to proactively request this information from their patients—something she believes is important not just for research purposes, but also to ensure LGBTQ individuals receive dignified and respectful cancer care. “Going through cancer treatment is hard enough without having to jump back into the closet in the presence of your medical team,” she says. “I often see oncologists who worry about being intrusive, but in reality sexual orientation is an important part of how many in the LGBTQ community have developed their sense of self, and they want to be asked about it because they want to feel understood as people by their doctors.”

Additional findings of the ESMO-SIOPE survey confirm that a shift in physicians’ attitudes is needed in this area, as a high level of consensus among participating oncologists about the need to know their patients’ gender identity (75%) and sex at birth (78%) dropped to just 54% regarding the importance of knowing their sexual orientation. In practice, only a minority of respondents (42%) reported asking their patients these questions during the first visit.

Minor modifications to oncologists’ habitual questioning are all it would take, according to Margolies, to avoid false assumptions and breakdowns in communication. “Instead of asking a woman if her husband is here with her, a more welcoming question would be: ‘Is there someone you would like to bring in with you today?’,” she suggests, highlighting the importance of acknowledging LGBTQ patients’ support persons and caregivers in a context where individuals may be estranged from their biological families and more frequently report feelings of social isolation and discomfort with mainstream cancer patient support groups (Radiography 2021 May 1;27(2):633-644).

Different approaches to care should be possible

Similarly, Margolies advocates that therapeutic choices should be discussed with patients not according to their specific sexual orientation or gender but on a continuum of possible individual preferences: “For example, some breast cancer patients report feeling pressure from their doctors to undergo conventional reconstructive surgery when they would rather opt for so-called ‘flat closure’—something for which there is widespread acceptance within the lesbian community, and which transgender men may also take as an opportunity to obtain the male-contoured chest they desire,” she says.

Yielding further insights into the unmet needs expressed by LGBTQ cancer patients, a survey of 2,728 survivors in the USA (National LGBT Cancer Network) found that 82% of respondents had not been offered fertility preservation options before undergoing treatment, with some reporting they would have liked their doctor to better address issues of sexual function and sexual health from the outset. Meanwhile, a majority of participants (58%) felt it was important to include LGBTQ-specific resources in post-treatment care plans and 85% saw a need for tailored mental health resources.

As mental disorders are known to be particularly prevalent among transgender persons (Ann Epidemiol. 2019 November;39:1-7.e1), Saloustros recognises that the oncological management of these individuals remains challenging in the absence of sufficient evidence regarding the role of gender-affirming hormones in cancer risk and tumour development versus the mental health risk of asking a patient to discontinue them (Gynecol Oncol. 2021 May 1;161(2):342-346). “Some people would rather die than give up their hormones,” Margolies stresses, concluding that shared decision-making with patients must, in these cases and in general, be accompanied by respect for the individual choices people ultimately make.

ESMO E-learning

For more insights into this topic, ESMO has recently released an E-Learning module offering oncological considerations for the LGBTQ patient. It is available on ESMO’s online education platform OncologyPRO. 

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