“A Truly Invisible Species”: What we know about GBTQ+ prostate cancer patients—and what we don’t!

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“If prostate cancer, in general, is off most people’s radar screen, then gay men with prostate cancer are a truly invisible species.” [Vincent & Lowe, 2005, p. 2]

Prostate cancer is the most commonly diagnosed cancer and the third-leading cause of cancer death among Canadian males [1]. Prostate cancer is very treatable, so most individuals diagnosed with prostate cancer survive. This is great news, since it means that most patients live with prostate cancer, and aren’t dying from it. However, this also means that prostate cancer patients live with the many effects of the cancer itself and the side effects of the treatments undertaken. As such, one area of research has focused on the experiences of patients, and how the cancer and its treatments impact their lives. This work has been really useful in terms of creating supports and resources for prostate cancer patients.

But there is a problem: much of the research on prostate cancer patient experiences has been restricted to heterosexual (i.e., straight) men. This means that gay, bisexual, transgender, and queer prostate cancer patients, as well as prostate cancer patients of other sexual orientations and/or gender identities, have largely been left out of previous studies. In fact, from 2000 to 2015, only 30 studies on gay and bisexual prostate cancer patients were published [2]. And while there are likely many similarities between prostate cancer patients of different sexual orientations and gender identities, we obviously can’t assume that their experiences are completely identical.

In fact, the research that has focused specifically on gay and bisexual prostate cancer patients tells us that there are many differences. For one, the sexual side effects of prostate cancer treatment might impact gay and bisexual men differently than heterosexual men. To name one example, firmer erections are required for anal penetration than for vaginal penetration, so treatment-induced erectile difficulties might cause men who typically assume the insertive (or “top”) role in anal intercourse to change sexual roles to being the receptive partner (or “bottom”) [3]. A man’s sexual role can be strongly tied to his identity, so having to switch roles is not necessarily a simple solution to this problem [4; 5; 6].

It’s not just sexual issues that prostate cancer patients have to deal with. A minority of prostate cancer patients report significant depression and/or anxiety [7; 8]. When gay and bisexual prostate cancer patients are compared to previously published data from (heterosexual) prostate cancer patients, they report worse mental health functioning [5]. However, it’s important to note that gay and bisexual men generally tend to report worse mental health functioning than heterosexual men [9]. Still, this difference between heterosexual and gay and bisexual prostate cancer patients shouldn’t be dismissed; worse mental health in prostate cancer patients has been shown to have a negative impact on their quality of life [8]. On the other hand, positive social support, such as from friends and family, has been associated with better mental and physical health-related quality of life [10].

So, even though the research is limited, we know that gay and bisexual prostate cancer patients have unique experiences. In a perfect world, their healthcare providers would address their specific needs and tailor their care to suit them. Unfortunately, not all LGBT (lesbian, gay, bisexual, and transgender) cancer patients choose to disclose their sexual orientation or gender identity to their healthcare providers, and about half of those who do disclose only do it to correct assumptions made by their healthcare providers that they are straight [11]. In other research, many gay and bisexual prostate cancer patients reported that their healthcare professionals were either unable or unwilling to discuss their sexual concerns [12]. Unfortunately, this isn’t limited to gay and bisexual prostate cancer patients; cancer patients in general report unmet needs when it comes to their healthcare providers talking to them about sexuality after cancer [13].

You’ve probably noticed that I’ve spent this entire blog speaking only of gay and bisexual prostate cancer patients. What about prostate cancer patients of other sexual orientations? What about transgender prostate cancer patients? Unfortunately, the research just isn’t there yet. Previous research suggests that prostate cancer is pretty rare in transgender women who have undergone gender affirming care (specifically, the surgical removal of testicles and estrogen therapy), but also possibly more aggressive [14; 15]. But we don’t know anything about their experiences. There are so many questions to answer.

I’m getting ready to launch the study that will serve as the basis of my Master’s thesis, and it’s going to focus on the experiences of prostate cancer patients of all sexual orientations and gender identities, in order to be able to make comparisons between groups. We are the SexLab, so of course I am particularly interested in sexual functioning and sexual and relationship satisfaction in this patient population, but I also want to know about their mental and physical wellbeing, their sense of social support, and their experiences with the healthcare system. As I hope you’ve learned from reading this blog post, there are a lot of unanswered questions when it comes to prostate cancer patients of different sexual orientations and gender identities, and I’m hoping to answer as many of them as I can.

Our study will be launching within the next month. If you were diagnosed with non-metastatic prostate cancer within the past five years and are interested in participating, or you would like more information about the study, please contact us at sex.lab@queensu.ca. If you know someone who might be interested in participating, have them get in touch with us.

Meghan K. McInnis, BScH MSc Student, Clinical Psychology Sexual Health Research Laboratory

  1. Canadian Cancer Society’s Advisory Committee on Cancer Statistics (2017). Canadian cancer statistics 2017. Canadian Cancer Society: Toronto, ON.
  2. Rosser, B. R. S., Merengwa, E., Capistrant, B. D., Iantaffi, A., Kilian, G., Kohli, N., … West, W. (2016). Prostate cancer in gay, bisexual, and other men who have sex with men: A review. LGBT Health, 3(1), 32–41.
  3. Goldstone, S. E. (2005). The ups and downs of gay sex after prostate cancer treatment. Journal of Gay & Lesbian Psychotherapy, 9, 43–55.
  4. Asencio, M., Blank, T., Descartes, L., & Crawford, A. (2009). The prospect of prostate cancer: A challenge for gay men’s sexualities as they age. Sexuality Research and Social Policy, 6(4), 38–51.
  5. Hart, T. L., Coon, D. W., Kowalkowski, M. A, Zhang, K., Hersom, J. I., Goltz, H. H., … Latini, D. M. (2014). Changes in sexual roles and quality of life for gay men after prostate cancer: Challenges for sexual health providers. The Journal of Sexual Medicine, 11, 2308–2317.
  6. Thomas, C., Wootten, A., & Robinson, P. (2013). The experiences of gay and bisexual men diagnosed with prostate cancer: Results from an online focus group. European Journal of Cancer Care, 22(4), 522–529.
  7. Sharpley, C. F., & Christie, D. R. (2007). An analysis of the psychometric profile and frequency of anxiety and depression in Australian men with prostate cancer. Psycho‐Oncology, 16, 660-667.
  8. Punnen, S., Cowan, J. E., Dunn, L. B., Shumay, D. M., Carroll, P. R., & Cooperberg, M. R. (2013). A longitudinal study of anxiety, depression and distress as predictors of sexual and urinary quality of life in men with prostate cancer. British Journal of Urology International, 112(2), E67-E75.
  9. Cochran, S. D., Mays, V. M., & Sullivan, J. G. (2003). Prevalence of mental disorders, psychological distress, and mental health services use among lesbian, gay, and bisexual adults in the United States. Journal of Consulting and Clinical Psychology, 71, 53–61.
  10. Mehnert, A., Lehmann, C., Graefen, M., Huland, H., & Koch, U. (2010). Depression, anxiety, post-traumatic stress disorder and health-related quality of life and its association with social support in ambulatory prostate cancer patients. European Journal of Cancer Care, 19(6), 736–745.
  11. Kamen, C., Smith-Stoner, M., Heckler, C., Flannery, M., & Margolies, L. (2015). Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers. Oncology Nursing Forum, 42(1), 44–51.
  12. Rose, D., Ussher, J. M., & Perz, J. (2017). Let’s talk about gay sex: Gay and bisexual men’s sexual communication with healthcare professionals after prostate cancer. European Journal of Cancer Care, 26, e12469.
  13. Gilbert, E., Perz, J., & Ussher, J. M. (2016). Talking about sex with health professionals: The experience of people with cancer and their partners. European Journal of Cancer Care, 25, 280–293.
  14. Gooren, L., & Morgentaler, A. (2014). Prostate cancer incidence in orchidectomised male-to-female transsexual persons treated with oestrogens. Andrologia, 46(10), 1156–1160.
  15. Hoffman, M. A., DeWolf, W. C., & Morgentaler, A. (2000). Is low serum free testosterone a marker for high grade prostate cancer? Journal of Urology, 163, 824-827.