© Springer International Publishing Switzerland 2015
Ulrike Boehmer and Ronit Elk (eds.)Cancer and the LGBT Community10.1007/978-3-319-15057-4_1010. Gay Men and Prostate Cancer: Opportunities to Improve HRQOL and Access to Care
Gilad E. Amiel1, Heather H. Goltz2, 3, Evan P. Wenker1, Michael R. Kauth4, 5, 6, 7, Tae L. Hart8 and David M. Latini1, 5
(1)
Scott Department of Urology, Baylor College of Medicine, Houston, TX, USA
(2)
Social Work Program, University of Houston—Downtown, Houston, TX, USA
(3)
Section of Infectious Diseases, Department of Medicine, Baylor College of Medicine, Houston, TX, USA
(4)
VA South Central Mental Illness Research, Education and Clinical Center, Houston, TX, USA
(5)
Mental Health Care Line, Michael E. DeBakey VA Medical Center, 2002 Holcombe Blvd, 77030 Houston, TX, USA
(6)
Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey VA Medical Center, Houston, TX, USA
(7)
Department of Psychiatry & Behavioral Sciences, Baylor College of Medicine, Houston, TX, USA
(8)
Department of Psychology, Ryerson University, Toronto, ON, Canada
Abstract
Little previous research has focused on gay and bisexual men who develop prostate cancer. However, a few small studies have recently been published that begin to tell the story of the specific problems gay and bisexual men with prostate cancer face. In this chapter, we summarize this recent literature and offer specific suggestions for changes to made by urologists and other cancer treatment providers to address the unique needs of gay and bisexual men for survivorship services. In addition, we discuss techniques that providers can use to make their practice more welcoming for gay and bisexual men facing prostate cancer.
Overview
Prostate cancer (PCa) is the most common male malignancy. There were an estimated 240,000 new cases and over 2.6 million survivors in the United States in 2013 [1]. While there has been no large-scale, population-based study examining the prevalence of prostate cancer by sexual orientation, some work has suggested that gay and bisexual (G/B) men may be diagnosed less frequently than heterosexual men [2]. However, using a conservative estimate of the prevalence of G/B men in the general population of 2–3 %, at least 5000 G/B men are diagnosed with prostate cancer each year; over 50,000 are still living following treatment [3].
Compared to their heterosexual counterparts, G/B men face several unique challenges in healthcare settings. A long-standing concern is that G/B men are likely to have prostate cancer diagnosed at a later stage relative to heterosexual men. Many in the gay community believe that gay men are likely to receive inadequate prostate care, citing discomfort coming out to physicians [4], lack of adequate social support [5], and the possibility of excessively rough or violent rectal exams by homophobic practitioners [6]. Stigma around homosexuality may be related to negative experiences in the health care system, such as providers failing to ask about sexual orientation and assuming heterosexuality [7]. Race and ethnicity may compound stigma further, as data from large study of California men suggests that G/B African-American men receive prostate specific antigen testing less frequently than heterosexual African-American men or G/B Caucasian men [8]. Taken together, negative experiences with the healthcare system are likely related to the poorer health outcomes experienced by lesbian, gay and bisexual persons [9].
Like many heterosexual men, gay men have limited understanding of their prostate or the range of sexual challenges associated with prostate cancer and its treatment [4]. With hundreds of thousands of G/B men facing the prospect of future prostate disease, it is essential for this population to be knowledgeable about their risk, options for treatment, ways to improve health-related quality of life (HRQOL) after treatment, and what to expect from their health care providers. By the same token, providers need to understand the challenges faced by G/B with PCa, some of which are unique to this population. In this chapter, we briefly outline the treatments for PCa and typical changes in HRQOL post-treatment. We then describe the unique concerns that G/B men with PCa may have, summarize the limited existing literature on HRQOL for G/B men with prostate cancer, and suggest ways in which health care professionals may provide more patient-centered, affirming care for G/B men with PCa.
Prostate Cancer Treatment and Health-Related Quality of Life
The currently available treatments for localized prostate cancer carry the risk of a number of possible iatrogenic symptoms, primarily urinary and bowel incontinence and erectile dysfunction (ED) [10]. The issue of iatrogenic symptoms is particularly important to men with prostate cancer because their prognosis, relative to other cancers is very good and the potential treatment-related symptoms can have such important implications for HRQOL. Because of early prostate cancer’s long natural history, men who develop iatrogenic symptoms will experience those symptoms for years [11].
Treatment-related symptoms vary by the treatment received. Men who receive a radical prostatectomy (RP) are more likely to have problems with urinary and sexual functioning. Radiotherapy patients are more likely to experience bowel problems [10, 11]. However, this symptom picture may change over time. Surgery patients frequently report substantial improvements in their urinary and sexual functioning 12 months after treatment [12]. A recently published study shows that overall quality of life, sexual desire and function, bladder function, and fatigue are the symptoms that persist at 30 months post-treatment for surgery patients [13]. Patients receiving radiotherapy have a different prognosis. While their urinary functioning remains fairly stable, sexual functioning for radiotherapy patients declines steadily over time [12, 14]. Radiotherapy patients also report substantial declines in bowel function [15]. Hormone therapy patients report both localized problems (e.g., ED) and systemic concerns, such as fatigue, depression, hot flashes [16].
The Concerns of Gay and Bisexual Men
Various treatment modalities have different implications for G/B men when compared with heterosexual men. Researchers have hypothesized that the effects of external pelvic beam radiation may more severely affect G/B men because of the nature of the side effects on G/B men’s sexual practices. Despite advances in radiation therapy, significant percentages of patients who undergo pelvic radiotherapy for prostate cancer are affected by fecal urgency, involuntary flatulence, and incontinence. Furthermore, many men will suffer from significantly decreased sphincter pressure and rectal capacity [17]. These iatrogenic changes are likely to significantly impact the sexual function of G/B men, particularly those who are primarily anal-receptive in their sexual behavior, as severe anal damage may be a contraindication to anal intercourse.
There has also been concern that the ED patients experience following surgery may be more difficult to treat effectively in G/B men [3]. First-line oral ED treatments are designed to enable vaginal intercourse and may not be capable of enabling erections sufficient for anal penetration given the increased pressure of the anal sphincter [18, 19]. After anal penetration, the insertive partner also may have difficulty maintaining their erections, if penetration forces blood from the penis [18].
Ejaculatory dysfunction after PCa treatment causes distress for many men but may be particularly problematic for G/B men. Research with G/B men has documented the cultural significance among gay men around the eroticization of ejaculate and semen [4, 20]. Ejaculation has been described as crucial to satisfying sex and maintaining relationships with partners [4]. Thus, the loss of ejaculation after PCa treatment is a side-effect that will impact HRQOL among many G/B men and that providers should warn G/B men about this side-effect before treatment.
Health-Related Quality of Life in Gay and Bisexual men—What Do We Know?
Until recently, little was known about HRQOL in G/B men with PCa or how it might differ from their heterosexual counterparts. Several small-to-medium size studies have begun to appear in the literature. Like heterosexual men, G/B men experience PCa as having a substantial impact on HRQOL though some report transforming the experience into a positive effect on their life [21]. A qualitative study by Thomas and colleagues eloquently described the struggles with post-treatment symptoms of incontinence and sexual dysfunction. Participants also noted that urologists need to understand that gay men’s experience of PCa may be substantively different than heterosexual men [21]. In particular, participants noted the dismissive attitude that many perceived from their urologists, prompting some to seek out another provider.
Another small study examined differences in sexual functioning before and after the introduction of hormonal therapy in a sample of heterosexual and gay men [22]. Gay men (N = 12) were more adversely affected in the areas of sexual arousal, orgasm function, sexual desire, and overall sexual satisfaction after treatment with bicalutamide when compared with heterosexual men. This difference may arise from an increased importance of androgen, especially for ejaculation, in G/B sexuality [22]. A pilot study of 15 gay men treated with radiation or surgery examined disease-specific HRQOL using the Expanded Prostate Cancer Index (EPIC) [23], a widely-used, validated measure, and the ejaculatory function and bother scores from the Men’s Sexual Health Questionnaire (MSHQ) [24]. While the small sample size precluded formal statistical testing, radiation patients were better able to maintain insertive and receptive anal intercourse [25]. Most participants reported difficulties with urinary, bowel, and ejaculatory functioning and reported being “bothered” by their ejaculatory difficulties [25].
Three larger cross-sectional studies have examined difference in HRQOL between G/B and heterosexual men. Men in the US, Australia, Canada, United Kingdom, and other countries completed an anonymous, online survey using the EPIC [23]. The authors compared heterosexual (N = 460) and G/B (N = 96) men on a range of diagnostic and HRQOL outcomes [26]. G/B men were diagnosed with PCa at significantly younger ages in this study. There were no differences between the two groups in the type of PCa treatment selected. On the EPIC, the two groups did not differ on sexual functioning or urinary incontinence. In both groups, 60 % of the respondents reported “never or almost never” being able to achieve an erection during sex. Among the respondents who could achieve an erection sufficient to attempt penetration, more than one-third of each group reported “never or almost never” achieving satisfaction with orgasm. G/B men in the study reported significantly greater “bother” with their sexual functioning. G/B men also reported worse ejaculatory functioning than heterosexual men and greater “bother” because of their diminished ejaculation [26].
In the second large cross-sectional study, 341 heterosexual men and 111 gay men were interviewed about their post-treatment HRQOL [27]. Gay men reported significantly worse urinary and bowel functioning than heterosexual men. Among gay men, younger men reported lower HRQOL than older men. Gay men reported significantly lower masculine self-esteem, less affection from their partners, and more treatment regret than heterosexual men. Unlike the previous studies, no differences in sexual functioning were found between heterosexual and gay men. It should be noted that a different HRQOL instrument was used in this study, meaning direct comparisons with other studies that used the EPIC difficult. Differences in question wording may have affected the investigators’ ability to detect differences in sexual functioning.
The third large cross-sectional study also compared HRQOL among G/B men and heterosexual men after treatment [28]. Ninety-two men completed an internet-based survey using the EPIC and MSHQ to measure disease-specific HRQOL and validated measures of fear of recurrence [29], illness intrusiveness [30], and general HRQOL [31]. Data were compared to published means from heterosexual samples of PCa survivors. Gay men reported better sexual functioning, with no differences between groups on sexual “bother.” Gay men reported significantly more “bother” in the urinary, bowel, and hormonal domains of the EPIC. Gay men reported greater psychosocial impairment than heterosexual men, including greater fear of cancer recurrence and worse scores on the Short Form -36 mental composite score. Even though sexual functioning was higher among gay men, they reported a number of concerns related to ejaculatory difficulties, climacturia, and changes in their primary relationship because of changes in sexual functioning. When asked to compare pre- and post-treatment functioning, 40 % of the gay men reported their frequency of sexual activity decreased “a lot.” For many men, their erectile difficulties prevented them from resuming insertive sexual activity after treatment.