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

Tweet “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.

SexLab Research Update!

Tweet SexLab has been conducting research for over a decade and our blog is coming up to a 2-year anniversary! Over the last two years, we have blogged about many different sexuality topics and discussed some of the awesome research we have conducted.

In this blog, we present you with lab highlights from 2016-17 to celebrate the many amazing accomplishments of our lab members. As well, we want to showcase what to expect from SexLab in the coming years!

First up, our extraordinary Lab Director, Dr. Caroline Pukall, has been incredibly productive with writing 18 new publications, 4 book chapters, and numerous presentations since 2016. On top of that impressive list, she has also published the 2nd edition of her Human Sexuality: A Contemporary Introduction (Oxford University Press, 2017) textbook. The first edition of this Canadian textbook was so well received upon its release in 2014, Caroline was awarded the Professional Book Award from the Society for Sex Therapy & Research (SSTAR) in 2016.

Caroline has also received funding from CIHR, the National Vulvodynia Association, and the American Institute of Bisexuality. Currently, she is working on numerous projects with students and collaborators on different topics, including the following: persistent genital arousal disorder, sexual arousal, vulvodynia, relationships, prostate cancer, postpartum sexuality, and questionnaire development. At the heart of her work is the research she is involved in with her stellar and enthusiastic students.

Next up, our senior PhD students, Jackie Cappell and Katrina Bouchard.

Jackie has completed data collection and analysis for the first study of her dissertation investigating nulliparous women's perceptions of and preferences for childbirth, especially as they relate to mode of delivery. Data collection is ongoing for Jackie's in-lab study investigating the role of mode of delivery on postpartum sexual function. She plans to complete data collection by the Fall 2017, just in time to start applying for Clinical Psychology Residency programs. In the past year, Jackie has published 3 papers (Journal of Sex Research, Midwifery, Canadian Journal of Human Sexuality), and more are coming your way!

Katrina completed data collection for her dissertation in May 2017. The first session of the two-part study was conducted to validate a new way of assessing genital blood flow continuously in women. The second session focused on investigating individual differences in women’s mind-body connection during sexual arousal (i.e., sexual concordance) and how porn preferences might play a role in this relationship. In the past year, Katrina published a paper in the Journal of Sex Research showing that women’s sexual concordance varies depending on how genital response is measured, and the results were covered by Playboy’s Debra Soh. Katrina has also collaborated with Dr. Martin Lalumière at the University of Ottawa on a paper investigating the effect of sex drive on paraphilic behaviours in men and women, which has been accepted for publication in a special issue of the Canadian Journal of Human Sexuality.

After both successfully defending their Master’s in the summer of 2016, our first-year PhD students, Robyn Jackowich and Stéphanie Gauvin have had a very busy year with volunteering, media outreach, and conference travels!

Robyn is in the process of preparing her Master’s research for publication, which focused on: 1) symptom characteristics of persistent genital arousal in women (Journal of Sex and Marital Therapy); 2) the impact of persistent genital arousal symptoms on women’s psychological, sexual, relationship, and daily functioning; and 3) the similarities between persistent genital arousal and vulvodynia (e.g., unexplained, chronic vulvar pain).

Robyn is the well-deserved recipient of the Canadian Institutes of Health Research, Vanier Canada Graduate Scholarship for 2017-2020. As she moves into her doctoral research, she will continue to focus on persistent genital arousal disorder (PGAD). The results of her Master’s thesis highlighted the distressing nature of this condition, as well as the need for greater understanding of PGAD’s complex and unknown etiology so that more effective treatments can be provided. Her doctoral research will include an investigation of psychosocial, sensory, and vascular factors involved in PGAD as well as the interrelationships among these factors (funded by the Canadian Institutes of Health Research).

Stéphanie is currently running a longitudinal continuation of her Master’s Thesis examining how same-gender and mixed-gender couples navigate sexual issues in their relationships. This past year, she co-supervised undergraduate Honours thesis student Jillian Steele’s project examining healthcare students’ attitudes and competency in working with sexual and gender diverse clients. Stay tuned for the results!

Stéphanie is also getting ready to launch a study examining the sexual and relational experiences of self-identified bisexual individuals (funded by the American Institute of Bisexuality). Her doctoral research (funded by the International Society for the Study of Women’s Sexual Health) will examine the experiences of chemically-induced menopause in survivors of breast cancer.

On top of conducting multiple studies, Stéphanie has found time to attend and present at several conferences and volunteer her time for outreach programs such as Let’s Talk About Sex: Common Sexual Problems and How to Talk About Them. Workshop presented at the Clinical Psychology Outreach Program, Queen’s University, Kingston, ON (Nov. 2016).

The newest additions to the SexLab in September 2016, Meghan McInnis and Lindsey Yessick, have smoothly started their Master’s thesis career.

Meghan has successfully defended her thesis proposal, and is getting ready to launch her study in the next few months--an online survey to learn more about the experiences of prostate cancer patients across various domains (mental health, quality of life, sexual functioning, sexual and relationship satisfaction, and experiences with the healthcare system). For this study, participants of all sexual orientations and gender identities will be recruited in order to explore variation in the experiences of prostate cancer patients. Our plan is to follow up the results of this study with an additional online survey, as well as detailed interviews.

Lindsey has already launched an fMRI study (funded by the National Vulvodynia Association) examining how women who experience genital pain process pain in the brain and spinal cord (with the Stroman lab). She is also working on the details of another exciting imaging study on clitoral structure and changes during varying states of arousal (with the Stroman lab and SageLab supervisor, Dr. Chivers). And if this suite of studies wasn't enough, Lindsey is also partnering with the Attention Lab at Queen’s to examining attentional differences in response to erotic stimuli in women with and without genital pain.

We also have a new student, Kayla Mooney, who will be joining us in the Fall! We cannot wait to provide you with updates about Kayla’s work!

Phew! That is a lot to celebrate. Sexual health is such an essential field of study and here at SexLab we are all equally proud and grateful to be conducting important, progressive research. We are thankful to all the funders, participants, volunteers, collaborators, and blog readers for supporting us! We look forward to decades more sexual health research!

Shannon Coyle, BSc., BAH., MA. Research Associate Sexual Health Research Lab