“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.

(Sex)ability Goes All The Way

Tweet Sexual health must be understood holistically including both physiological and subjective sexual functioning. Physiological sexual functioning refers to physical aspects such as the sexual response cycle, frequency, and quality of sexual behaviour, whereas subjective sexual functioning reflects an individual’s appraisal of their sexuality, such as satisfaction with sexual function, or quality of current intimate relationships (Eisenberg et al., 2015). Both psychological and subjective sexual functioning can be negatively impacted by injury and/or disability. Unless you have been personally affected, or are connected to someone who has been affected by disability, you may have never had to imagine what it would be like to have sex under these limitations. Disability can be understood as a result of the interaction between characteristics of the individual and those of their environment (Eisenberg et al., 2015). Using this definition, the importance of adaptation in efforts to diminish disability is realized. It highlights that the interaction between the individual and their environment is the causal factor for disability and not the person’s impairment itself. Some may believe that those who rely on a wheelchair for mobility as a result of paralysis, stroke, cerebral palsy, etc., do not engage in the act of sexual intercourse at all. However, this is not true! The sex lives of those in wheelchairs are often quite active. As described by Eisenberg et al. (2015) disability shapes a person’s physical, emotional, mental, and social experience and expression of their own sexual nature. I hope to address a need to spark discussion about disability-relevant variations of intimate relationships and sexual activity.

Factors affecting sexual health in those with disability can stem from direct consequences of the injury or disease, and also from indirect consequences associated with the condition that interfere with sexual experience. According to Eisenberg et al. (2015), direct factors include any disruptions to the physiological sexual response cycle that are a direct consequence of the injury or disease (i.e. erectile dysfunction after spinal cord injury). Conversely, indirect factors refer to issues associated with the condition (i.e. mobility, bowel and bladder function, cognitive functioning, etc.), as well as psychosocial elements associated with living with a disability (i.e. negative body image) that interfere with the overall sexual experience. Too often the development of sexual rehabilitation plans seeks to restore what would be considered “normal” sexual functioning by focusing on only the direct factors impeding on one’s sexual health. Unfortunately, such a narrow focus discriminates in favour of able-bodied individuals, neglects the psychosocial factors such as body image, sexual self-esteem, internalized negative stereotypes about disability, and cognitive issues that are just as important to address during therapy. These indirect consequences appear to be particularly important predictors of the quality of one’s subjective sexual functioning. Eisenberg et al. (2015) describes a sex-positive, adaptation-focused approach to assessment and treatment that draws on strengths as opposed to focusing on the limitations of people with disability. Sexual assessment is the first step in communicating to a person with disability that the health care provider understands the value of sexual health as part of whole health and is open to discussing sexual issues according to Eisenberg et al. (2015). Assessing the needs of persons with disability seeking medical, and/or mental health care for issues related to sexuality requires an integrated biopsychosocial approach.

How do people in wheelchairs even have sex, you may ask? Well, just like any other person, usually in bed! However, many of the direct consequences of disability can be addressed using aids to help adapt sexual activity. Current aids available on the market include equipment such as vibrators, sex swings, sex wedges, sex chairs (i.e. IntimateRider), and restraints. The partners of wheelchair users have admitted that the wheelchair itself becomes a sexual aid at times. Most modern wheelchairs have removable armrests, swing away footplates, folding backrests, locking brakes, and power tilt, all of which can be used easily to accommodate wheelchair sex and greater sexual freedom. Just as you would for sex in any chair, sliding the male or female’s bottom to the front edge of the wheelchair seat gives greater access for sex. It is important to experiment with your partner, and encourage open dialogue with them. The process of re-learning about your body, or your partner’s body, new likes, and dislikes, can be a pleasurable one. There are many blogs and online forums that allow people with disabilities to ask questions, share their experiences, and provide great suggestions to others. For example, Graham Streets, founder of the Mad Spaz Club Blog, shares a few tips on how to better enjoy sex as a person with disability. He advises that some sex positions are easier to do than others in bed. With that, he cautions when limited sensation below the level of spinal cord injury exists, sensitivity above the level of injury often increases and can become hypersensitive and encourages partners to explore and pleasure these new sensitive spots. He also highlights a new appreciation for scented candles, rose petals, lingerie, nudity, enticement, and foreplay for all sexes as a reminder that sexual intimacy is more than just penetrative intercourse.

Those who were born with, or have acquired a disability of some sort are not damaged goods unable to participate in sexual intimacy, sex is an activity for everyone. Prioritizing the sexual rights of people with disabilities, as well as abolishing stereotypes, and taboos will ensure that people with disabilities, have greater education and access to positive subjective and physiological sexual functioning. Adjustment to disability is an active, ongoing process. Whether it be a medical or a psychological intervention, effective treatment requires a sex-positive, biopsychosocial approach. We must adapt the sexual script to emphasize the strengths of persons with disability putting the patient first, and not the desire to restore normalcy.

Brittany McBeath, BAH, Psychology.

References

Eisenberg, N. W., Andreski, S-R., & Mona, L. R. (2015). Sexuality and physical disability: A disability affirmative approach to assessment and intervention within health care. Current Sexual Health Reports, 7(1): 19-29.

Streets, G. (2011, October 15). Wheelchair sex after spinal cord injury. [Mad Spaz Club Web Blog]. Retrieved from http://www.streetsie.com/spinal-injury-wheelchair-sex/comment-page-1/#comments