Out with Cancer Toward LGBTQI+ inclusive cancer

By Dr Rosalie Power, Associate Research Fellow, Translational Health Research Institute care

People with cancer who are lesbian, gay, bisexual, transgender, queer and/or intersex (LGBTQI+) often have unique experiences and needs. The Western Sydney University ‘Out with Cancer Study’, funded by the Australian Research Council (ARC), in partnership with PCFA, Cancer Council NSW, Canteen, BCNA, ACON and LGBTQI Health Alliance, explored these experiences with 430 LGBTQI+ people with cancer, 132 of their partners and carers, and 357 healthcare professionals.

Higher distress than the broader Australian cancer population

41% of LGBTQI+ people with cancer reported high or very high levels of distress, 3-6 times higher than previous non-LGBTQI+ cancer studies.

Higher levels of distress were reported by people were trans (binary and non-binary) compared to cisgender people, adolescents and young adults, compared to older people, those who were bisexual or queer, compared to lesbian or gay people, and those who lived in rural or regional areas, compared to urban areas.

Distress was associated with experiences of discrimination in life and during cancer care, feelings of discomfort being LGBTQI+, lower outness about being LGBTQI+ and lower social support. I don’t feel safe. I have to think ALL THE TIME in medical situations if it’s safe to come out. Correcting, educating, making formal complaints – I am enraged that my energy has been taken up by this my whole life when I’m in pain; very sick; recovering; scared. Queer femme, age 38, multiple cancers

Cancer impacted LGBTQI+ identities and body image

Difficulties ‘coming out’ to cancer healthcare professionals

Less than 1 in 5 participants were out to all healthcare professional involved in their cancer care. For many people, deciding if, when and how to disclose being LGBTQI+ added to distress during cancer. Many patients and carers felt excluded or invisible in cancer care, due to cis-heteronormativity – the assumption that everyone is heterosexual and cisgender. Our PCFA funded pilot research found that gay and bisexual men experienced greater distress than heterosexual associated with sexual changes after cancer. Loss of erectile function or ejaculate and reduced penis size threatened masculinity and gay identity. However, gay and bisexual men were more likely to use sexual aids or seek counselling for sexual changes. This enabled renegotiation of sex and intimacy

For some trans people, cancer treatment side effects erased gender affirmation. Loss of hair and weight loss exacerbated body dysphoria and resulted in participants being misgendered.

For some LGBTQI+ people cancer facilitated greater alignment of their body and identity. For example, cancer treatment which caused reduction in erectile function, penis and testicle size, or feminizing bodily changes, were affirming of identity for some trans women, as they mirrored the impacts of gender affirming hormonal therapy.

The importance of LGBTQI+ community connection

LGBTQI+ partners and chosen family (often other LGBTQI+ people) buffered negative experiences during cancer including helping navigate discrimination in cancer care and cis-heteronormativity.

A number of participants mobilized around their cancer experiences and set up services including support groups to build connections between LGBTQI+ people with cancer. These groups reinforced LGBTQI+ identities, reduced social isolation and helped participants navigate their cancer journey.

Here we are at a pride march. We all had t-shirts and arrows saying different things about our sexualities, genders and interests. Showing that we as a community are completely diverse. I also wore a t-shirt that said, “know your prostate” and as we walked along, I handed out pamphlets about a prostate cancer support group for LGBT people. It felt really important to me to be involved in this activism around sexuality and prostate cancer. Gay man, age 60, prostate cancer

Cancer healthcare professionals want to provide LGBTQI+ inclusive cancer care but lack knowledge and confidence.

Most healthcare professionals said they were comfortable treating LGBTQI+ patients but that they lacked confidence and wanted more education and training, particularly on the needs of patients with cancer who are trans or have intersex variation. I believe I am an open person and I am very happy to treat patients of the LGBTQI+ community but I acknowledge my knowledge is limited and I possibly carry some misconceptions about their lifestyle and needs. I would be very receptive to education on the issues that pertain to this community. Medical professional, age 41

Signs of LGBTQI+ inclusive cancer care

1. You feel emotionally and physically safe with health care professionals. 2. Healthcare professionals do not assume you are heterosexual and/or cisgender: use your preferred name and pronouns. 3. Your partners or chosen support people, are included in your care 4. Patient records allow you to record your LGBTQI+ status. 5. Your healthcare professionals understand your sexual needs during cancer. 6. You have access to cancer information that is

LGBTQI+ inclusive. 7. Healthcare environments signpost LGBTQI+ inclusivity (such as posters, flags and icons on resources). 8. Healthcare services have anti-LGBTQI+ discrimination policies. 9. You and your chosen support people have access to gender-neutral bathrooms.

More information

www.westernsydney.edu.au/outwithcancer

Ussher, JM, Perz, J., Rose, D., et al (2017) Threat of Sexual Disqualification: The Consequences of Erectile Dysfunction and other Sexual Changes for Gay and Bisexual Men with Prostate Cancer Archives of Sexual Behavior 46(7) 2043-2057. doi: 10.1007/ s10508-016-0728-0

Ussher, JM., Power, R., Perz, J., et al LGBTQI Inclusive Cancer Care: A Discourse Analytic Study of Health Care Professional, Patient and Carer Perspectives. Frontiers in Oncology. 2022; 12:832657. Ussher, JM., Allison, K., Perz, J., Power, R., et al LGBTQI Cancer Patients’ Quality of Life and Distress: A Comparison by Gender, Sexuality, Age and Cancer Type. Frontiers in Oncology. 2022. Doi 10.3389/fonc.2022.873642 Power, R., Ussher, JM., Perz, J., Allison, K., et al “Surviving Discrimination by Pulling Together”: LGBTQI Cancer Patient and Carer Experiences of Minority Stress and Social Support. Frontiers in Oncology. 2022; 12:918016. Ussher, J. M., Perz, J., Allison, K., Power, R. et al (2022). Attitudes, knowledge and practice behaviours of oncology health care professionals towards lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) patients and their carers. Patient Education and Counseling. 105(7), 2512-2523.