Out with Cancer: LGBTIQ+ Experiences of Cancer Survivorship and Care: Overview of Findings

Using surveys, interviews, and photo-elicitation, the Out with Cancer study examined the cancer survivorship and care experiences of 430 LGBTIQ+ people with cancer, across a range of age groups, tumour types, sexual and gender identities and including people with innate variations of sex characteristics. The perspectives of 131 LGBTIQ+ informal carers and 357 oncology healthcare professionals were also included. These websites of 61 Australian cancer organisations were audited to assess whether there was any mention of, or specific information for, LGBTIQ+ people with cancer and carers.Findings revealed that LGBTIQ+ people with cancer experience distress at rates three to six times higher than the general cancer population. Those who are bisexual, adolescents and young adults, transgender, those with innate variations in sex characteristics, and people in rural or regional locations, reported even greater distress levels. Multiple factors contributed to this distress, including minority stress (discrimination in general life and cancer care, being uncomfortable with being LGBTIQ+, fear of disclosure or concealment of one's LGBTIQ+ status), reduced social support, physical and sexual concerns after cancer, fear of cancer recurrence, and diminished connection to one's LGBTIQ+ identity or community. Among LGBTIQ+ caregivers, higher distress was associated with experiencing financial and health impacts related to caregiving. Although the physical and sexual impacts of cancer treatment are similar for LGBTIQ+ and non-LGBTIQ+ patients, these changes were found to have unique implications for how individuals understood and expressed themselves as LGBTIQ+. LGBTIQ+ people also reported different experiences around social support, exclusion, rejection, and discrimination. These issues are compounded by healthcare professionals' limited understanding of LGBTIQ+ needs and the importance of inclusive environments. As a result, many LGBTIQ+ people felt overlooked and underserved, leading to anxiety about disclosure or discrimination, heightened distress, and lower satisfaction with care.Despite these challenges, many LGBTIQ+ people exhibited resilience, finding support in LGBTIQ+ networks and chosen families, and directing their experiences toward advocacy efforts aimed at improving cancer care for other LGBTIQ+ individuals. The Out with Cancer Study has informed systemic changes to address the unique needs of LGBTIQ+ cancer survivors and carers including fostering the development of tailored information materials for LGBTIQ+ people with cancer and carers, and training for healthcare professionals.Funded by an Australian Research Council Linkage Grant (LP170100644), the Out with Cancer study was conducted at Western Sydney University, in collaboration with the Cancer Council NSW, Breast Cancer Network Australia, Canteen, Prostate Cancer Foundation Australia, ACON, and LGBTIQ+ Health Australia. An Advisory Group of LGBTIQ+ people, including some who had cancer, clinicians, community organisations, and researchers collaborated in the research and development of the translational outcomes.