Out with Cancer: LGBTQI+ experiences of cancer survivorship and care

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Do we understand the needs of lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI+) cancer survivors and their partners?

Many people would say “no”. LGBTQI+ people have been described as an “ignored epidemic” and a “growing and medically underserved population” in cancer care. The American Society of Clinical Oncology 1 recently stated that there is “insufficient knowledge about the health care needs, outcomes, lived experiences and effective interventions to improve outcomes” for LGBTQI+ populations. As a result, health care providers and policy makers are ill-equipped to provide culturally-competent advice or assistance to LGBTQI+ cancer survivors and their families 1, 2.

Some people say, “Why is this an issue? I treat all of my patients the same, regardless of gender or sexual orientation”. If we look at the growing evidence about LGBTQI+ cancer burden and unique survivorship experiences, we might think differently.

Cancer is a burden in LGBTI+ communities:

It is unknown how many cancer survivors are LGBTQI+, as cancer registries do not collect such data. Between 5-16% of the Australian population report same-sex attraction or are gender diverse, and up to 2% have a variation in sex characteristics, commonly called intersex. This translates into approximately 150,000 LGBTQI+ cancer survivors in Australia, with over 20,000 new cancer diagnoses expected in 2020. This is a sizable proportion of everyday oncology practice.

Evidence from epidemiological studies suggests that lesbian and bisexual women and gay men are twice as likely to be diagnosed with cancer than their heterosexual counterparts 2. This is partly explained by higher rates of smoking and alcohol consumption and low rates of cancer screening in LGBTQI+ communities. Obesity and nulliparity are additional risk factors for lesbian and bisexual women, and higher rates of HPV infection and Kaposi’s Sarcoma are risk factors for gay men. We know little about cancer burden in trans, gender diverse and intersex people.

Gay, lesbian and bisexual cancer survivors experience higher distress

There is growing evidence of health disparities impacting on gay, lesbian, and bisexual cancer survivors. Lesbian breast cancer survivors have reported greater psychological distress than heterosexual women, associated with greater social and relationship difficulties greater economic hardship and greater sexual disruption in sexual activity and desire 3, 4. Gay and bisexual men with prostate cancer report higher distress and more sexual concerns than heterosexual men 5, accompanied by significant anxieties about changes to gay identity and relationships 6. However, gay and bisexual men also have a greater likelihood to seek help for sexual rehabilitation and as a result report higher sexual functioning after treatment 7. So this isn’t a completely negative story.

We don’t know about the cancer survivorship experiences of LGBTQI+ people across other tumour streams, as there is an absence of research, other than isolated small scale studies 2.

Trans and gender diverse cancer survivorship

We also know little about the cancer survivorship experiences of transgender or gender diverse (TGD) people with cancer.  It has been suggested that embodied changes resulting from cancer may increase or decrease gender dysphoria. A bilateral mastectomy is medically similar to gender-affirming “top surgery”, which may facilitate an alignment between masculine or non-binary gender identity and embodiment 8. Some TGD individuals embrace the choice to forego breast reconstruction after mastectomy, deciding to “go flat” (also known as “flattopping”).  Conversely, mastectomy may be perceived to erase self-perceived femininity, or reverse embodied changes that have occurred as part of gender affirmation, and breast reconstruction may be welcomed. Some cancers are treated using hormone therapies, while others are hormone-sensitive, in both cases interacting with hormones used as part of gender transitioning and affirmation. Cancer related embodied changes may be complicated by gender-affirming procedures 9.  Urinary incontinence following vaginoplasty can be exacerbated by cancer treatment, and may also impact on bowel incontinence. Dilation of the neovaginal canal to prevent stenosis may also be impacted by vaginal dryness or surgery.

We need to understand health disparities and the complexity of LGBTQI+ experience of cancer and cancer survivorship across tumour streams, and across age groups, from diagnosis through to palliative care 1, 2.

This is the aim of the Out with Cancer study

The Out with Cancer study is based at Western Sydney University, funded by an Australian Research Council Linkage grant, in collaboration with The Cancer Council NSW, Prostate Cancer Foundation, National LGBT Health Alliance, AIDS Councils of NSW, Breast Cancer Network Australia, Sydney Children’s Hospital Network and CANTEEN.

 

What are the barriers and facilitators to culturally competent LGBTQI+ cancer care?

Access to culturally competent cancer information and care has a significant influence on survivorship outcomes. We already know that up to 30% of LGBTQI+ adults do not seek health care services or lack a regular health service provider, compared with 10% of the non-LGBTQI+ population 2. Experience or fear of discrimination in general healthcare may continue into cancer care, contributing to LGBTQI+ people feeling distrust and anxiety when accessing cancer services. This can result in avoidance of cancer screening and delays in medical help-seeking, with negative implications in relation to late cancer diagnosis. Disclosure of LGBTQI+ status can be associated with feelings of discomfort, embarrassment, and fear of treatment refusal, as well as privacy concerns 12. At the moment, sexual orientation is not recorded on the majority of intake forms, and gender options are generally male/female, with no option for TGD people to be recognised. At the same time, health care professionals often assume patients are heterosexual and cisgender, and can ignore same sex partners in consultations 12. As a result, LGBTQI+ people can feel invisible or excluded within cancer services. The binary gendering of some cancers, such as breast cancer being seen as a ‘women’s cancer’, may exclude  TGD and intersex people. In combination, this may lead to cancer care and information that is poorly tailored or inappropriate for LGBTQI+ people and their partners, contributing to distress in what is already a challenging time.

In many ways this is not surprising. Many health care professionals receive no training on the care of LGBTQI+ people, which may lead to gaps in knowledge of the cancer-related needs of LGBTQI+ patients and their partners. Programs of training that raise awareness of the intersection of cancer and sexuality or gender diversity, and LGBTQI+ specific resources and information will facilitate positive outcomes in cancer survivorship. The findings of the Out with Cancer study will be used to inform such training, as well as the development of practice and policy recommendations for health care professionals, and resources for LGBTQI+ people with cancer and their carers.

Innovative mixed method approach:

The Out with Cancer study is adopting an innovative mixed-method approach, combining qualitative and quantitative methods, including arts based methods. A survey of a broad cross section of LGBTQI+ cancer survivors and carers allows comparison with previous research on psychosocial outcomes and experience of cancer care.  Survey results will also provide insight into commonalities and differences across sexual and gender, identity, age, cancer stream, from diagnosis to palliative care. Interviews and photovoice methods will facilitate in-depth analyses of the experiences of LGBTQI+ cancer survivors and carers, and the complex intersections of identities in cancer survivorship and care. An audit of guidelines and resources, combined with survey and interviews with health professionals and other service providers, will identify barriers and facilitators to culturally competent LGBTQI+ cancer care. Together, the findings will allow for the translation of knowledge in cancer care, and with the aim of improving the quality of life and survivorship experiences of LGBTQI+ people with cancer and their carers.


If you are interested in hearing more about the Out with Cancer study, or helping us to recruit participants, you can contact us at: outwithcancer@westernsydney.edu.au

References

  1. Griggs J, Maingi S, Blinder V, et al. American Society of Clinical Oncology Position Statement: Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations. Journal of Clinical Oncology. 2017;35(19):2203-2208.
  2. Quinn GP, Sanchez JA, Sutton SK, et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA: A Cancer Journal for Clinicians. 2015;65:384-400.
  3. Boehmer U, Ozonoff A, Timm A, Winter M, Potter J. After Breast Cancer: Sexual Functioning of Sexual Minority Survivors. The Journal of Sex Research. 2014;51(6):681-689.
  4. Kamen C, Mustian KM, Jabson JM, Boehmer U. Minority stress, psychosocial resources, and psychological distress among sexual minority breast cancer survivors. Health Psychology. 2017;36(6):529-537.
  5. Ussher JM, Perz J, Kellett A, et al. Health-Related Quality of Life, Psychological Distress, and Sexual Changes Following Prostate Cancer: A Comparison of Gay and Bisexual Men With Heterosexual Men. The Journal of Sexual Medicine. 3// 2016;13(3):425-434.
  6. Ussher JM, Perz J, Rose D, et al. 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. 2017;46(7):2043-2057.
  7. Ussher JM, Rose D, Perz J, Dowsett G, Kellett A. Experiences of sexual rehabilitation after prostate cancer: A comparison of gay/bisexual and heterosexual men. In: Ussher JM, Perz J, Rosser BRS, eds. Gay and Bisexual Men Living with Prostate Cancer: From Diagnosis to Recovery. New York: Harrington Park Press; 2017.
  8. Taylor ET, Bryson MK. Cancer’s Margins: Trans* and Gender Nonconforming People’s Access to Knowledge, Experiences of Cancer Health, and Decision-Making. LGBT Health. Feb 2016;3(1):79-89.
  9. Kerr L, Fisher CM, Jones T. Key Informants Discuss Cancer Care Research for Trans and Gender Diverse People. Journal of cancer education : the official journal of the American Association for Cancer Education. 2020.
  10. Meyer D. An Intersectional Analysis of Lesbian, Gay, Bisexual, and Transgender (LGBT) People’s Evaluations of Anti-Queer Violence. Gender & Society. 2012/12/01 2012;26(6):849-873.
  11. Espelage D, Aragon S, Birkett M, Koenig B. Homophobic Teasing, Psychological Outcomes, and Sexual Orientation Among High School Students: What Influence Do Parents and Schools Have? School Psychology Review. 2008;37(2):202-216.
  12. Rose D, Ussher JM, Perz J. Let’s talk about gay sex: Gay and bisexual men’s sexual communication with healthcare professionals after prostate cancer. European Journal of Cancer Care 2017;26:e12469.

 

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About Author

Jane Ussher

Jane M Ussher is Professor of Women’s Health Psychology, in the Translational Health Research Institute, at Western Sydney University. Her research focuses on sexual and reproductive embodiment, and the gendered experience of cancer and cancer care. As a trained clinical psychologist, she has also made a contribution to the integration of research and clinical practice in gendered health, and has developed and evaluated a number of psycho-educational interventions in the field of cancer care. This includes resources to address sexual changes after cancer, fertility concerns, and the needs of cancer carers, funded by the Australian Research Council (ARC) in collaboration with Cancer Council NSW. Jane is author of over 300 papers and chapters, 12 books, and is editor of the Routledge Women and Psychology book series. She has received over $10M in research funding, and was awarded the Steven Grunberg Memorial Award, at the MASCC (Multinational Association of Supportive Care in Cancer) annual conference in 2019 for her research on gay and bisexual men’s experiences of prostate cancer. She is leading an ARC Linkage funded research study, on LGBTQI+ experiences of cancer, in collaboration with The Cancer Council NSW, Prostate Cancer Foundation, National LGBT Health Alliance, ACON, Breast Cancer Network Australia, Sydney Children's Hospital Network and Canteen. The study includes a survey, interviews and photo elicitation with LGBTQI+ cancer survivors and their carers, a survey of oncology health care professionals, and an audit of cancer guidelines. The findings will be translated into resources for LGBTQI+ cancer survivors and their carers, as well as practice and policy guidelines.

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