“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.

Multitasking with multiples: Sometimes I wish I had magical abilities and/or an extra hand (or two).

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Being a parent is hard work. Your life changes in ways you never anticipated; no matter how prepared you think you are, and you grow in ways that you never thought possible. Your whole focus changes, and non-child related things that used to be a big deal don't seem that big a deal anymore because your child (or children) matter more to you than anything. They matter so much more than the angst of having to trade in your sporty, zippy car for a safe, trundling minivan (complete with an integrated DVD system to keep the little one/s amused), or the fact that you were sleep deprived for so long that you were observed hallucinating at times.

Parenting is a challenging—and rewarding—experience. But are there specific challenges and joys to being a parent of multiples (twins or higher order multiples)? Or are the issues for parents of multiples simply double, or triple—or exponential—to the issues faced by parents of singletons or singletons born at different times? What about parents who have more than one set of multiples, or a mixture of singletons and multiples? There is very little research on this topic, and we would like to find out more. So, we have created a small survey targeted to all parents of multiples to start digging into many issues, from financial, to interpersonal, to health-related. The link for the survey can be found here: [insert link]

Some people say that ‘research’ is ‘me-search’ and sometimes that can be true. For me, with this project, it is certainly true. As a parent of multiples (fraternal twins), I was surprised at (and honestly, sometimes freaked out by) some of the situations I encountered from the second I would say the word ‘twins’ to people. Most of my surprise is aimed at what people will say to parents of multiples. And I get it: all parents receive unsolicited advice, are judged by others as ineffective no matter how we handle a screaming child at Wal-Mart, and are asked all sorts of inappropriate questions. Sure, I experienced all of that, but then I also received twin-specific questions/comments like these:

“Twins, huh? How did that happen? Did you have fertility treatment or did you make them the old-fashioned way?” (From numerous strangers on countless occasions. I would say: I have no idea how this happened!)

“You don’t look like a mother of twins.” (What?? Were the bags under my eyes and my incoherent sentences not enough?? Am I supposed to wear a cape or something??)

“Which one do you like best?” or “Which one is the better baby?” (I’m not kidding.)

“I can tell your babies were born early because of the shapes of their heads.” (Yes, someone said this to me.)

When my kids were 2 years old: “Are you having more kids? Because 3 is the new 2 now, you know, and now is the perfect time for you to have one more.” (Wow, well, since you say so… What’s your name again?)

“Are you sure they are yours?” (Good question. My best answer to that is: That’s what they told me at the hospital.)

“I had my two children a year apart, and that’s the same as having twins.” (Um…. No. Being a parent is hard no matter what, and I’m not interested in competing with you, but it is technically not the same thing.)

“Double trouble, eh? You must have your hands full with those kids!” (I’m pretty sure all parents have their hands full with their kid, or kids. When my kids were infants and I was solo parenting, I was literally immobilized at times with sleeping babies in my arms/on my body/in the wrap, wishing I had some of that Harry Potter magic/an extendable appendage [or two] to move the crackers (or whatever item I needed) closer to me. But I never complained about the cuddles!!)

It was only last year when I finally realized that most of the comments I received about twins from strangers were somewhat negative. My realization came when a parent at the school that my kids go to said to me: “Are they twins?” And I said “Yes!” And she said: “You are so lucky. I always wanted to have twins. How blessed you are!” And that just made my day. Because she is absolutely right.

If you are a parent with multiples, help us gather more information about the joys and challenges of raising multiples by taking our survey.

http://queensu.fluidsurveys.com/s/parentsofmultiples/

Caroline Pukall Ph.D., C.Psych.