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Gay Men and Prostate Cancer: Invisible Diversity

School of Family Studies, University of Connecticut, Storrs, CT

In their recent commentary on cancer care outcomes research, Ayanian et al¹ reflect the broader concern of the oncology community to understand better how to optimize cancer treatment and outcomes in ways that are appropriate to the racial, ethnic, age, and socioeconomic diversity of cancer experiences. Moreover, understanding the diversity of experiences with cancer adds to our broader comprehension of cancer treatment and outcomes themselves, and provides opportunities to develop more sophisticated theoretical and treatment models for all people. From prevention to treatment options to health-related quality of life and long-term survivorship, diversity clearly matters but is inadequately reflected in cancer research and practice.

Yet, despite at least some attention to factors such as race, ethnicity, age, and socioeconomic status, one group remains almost totally invisible—the gay, lesbian, bisexual, and transgender (GLBT) community. Although this situation applies to all forms of cancer and all parts of the GLBT community, for purposes of illustration, this comment focuses on gay and bisexual men and the most common nonskin cancer among men, prostate cancer. Although it is also important to recognize and include male to female transgender persons, who may have uniquely complex issues related to prostate health, I will refer to gay and bisexual men because of sheer numbers, with the implicit understanding of recognizing and attending to the broadest range of gender identification and sexualities.

With an estimate of 230,000 diagnoses in 2004² and nearly two million prostate cancer survivors just in the United States, understanding short- and long-term impact on men and their families is critically important for best practice. Correspondingly, there has been considerable research and discussion of best clinical treatment and disease management. A search of Medline on July 30, 2004, produced 42,179 article references, which reveal several clear patterns of results.^3,4 Prostate cancer survivors maintain high health-related quality of life, with a return to baseline and comparability to national norms of noncancer comparison groups within 6 months to a year after treatment. The only exceptions to high quality of life are related to sexual dysfunction and, to a lesser degree, urinary incontinence and bowel problems caused by treatment; percentages of long-term effects vary by major treatment choices. Long term, most men live cancer free after primary treatment or, if not, live for long periods of survivorship with the disease, although approximately 30,000 die in a given year.²

Because of the numbers of men involved and the nature of treatment effects, it is essential that information about prostate cancer and its effects be as richly textured and varied as the range of men in our society, and the range of masculinities and sexualities in middle aged and older men.⁵ This range includes many men who are not exclusively heterosexual. Using the numbers of men dealing with prostate cancer and a conservative estimate of the percentage of gay and bisexual men of 2% to 3%,^6,7 at least 5,000 gay or bisexual men are diagnosed each year and 50,000 or more are living after prostate cancer treatment. Millions of gay and bisexual men entering or beyond their 40s must deal in one way or another with the prospect of prostate cancer entering their lives; those in committed relationships with other men are obviously twice as likely as heterosexual men to have to deal directly with the disease within their couple. Thus, it is essential that the clinical oncology community is sensitive to the particular needs of gay and bisexual men because of their sexual and/or gender orientation. As with all men facing prostate cancer, of course this population needs appropriate and accessible information, treatment options, and support related to prevention, treatment, and survivorship.

Despite all of the attention directed toward understanding treatment outcomes and quality of life of men dealing with prostate cancer, and the significant numbers of gay or bisexual men who are dealing or may deal with the disease, there have been literally no studies that have looked specifically at the impact of this exclusively male disease on gay men. In the same Medline search that produced 42,719 references, when "gay" and "homosexual" were added as keywords, two studies appeared, and on examination neither is directly focused on gay men.^8,9

Although the numbers of gay or bisexual men dealing with prostate cancer provide sufficient reason to have research, practice, and education that focuses specifically on these groups, the specifics of the quality-of-life impact of prostate cancer add more urgency to those developments. Because of differences between them and most exclusively heterosexual men, gay and bisexual men are likely to be affected differently in all the major areas of impact that are most recognized—from sexuality, to social relationships, to relations with the medical community.

First, loss of sexual capability, as it is consistently defined in terms of erectile dysfunction, is clearly the most ubiquitous life-altering adverse effect of treatment for prostate cancer.^4,10,11 This basic area of life is also one that is distinctively different between exclusively heterosexual men and men who have sex with men at least some of the time (and among different subpopulations of the homosexual population with different sexual activity preferences). An illustration of the disregard of nonheterosexual populations is that common definitions of erectile function or dysfunction may be literally irrelevant to those populations, insofar as they are sometimes explicitly and often implicitly framed in terms of "the ability to have and maintain an erection sufficient for vaginal intercourse" or penetration.^12-14 Erections and their role in homosexual activity vary from that criterion in an obvious definitional way, but it is also the case that erectile function suitable for oral or anal penetration is different than that for vaginal intercourse (an aspect that will also be relevant for subgroups within heterosexual segments of the population). One specific example is that a gay man who is exclusively or primarily anal receptive may be less concerned about his own erections than both heterosexual and homosexual men who are penetrators, but he may be more concerned about the potential impact of radiation on bowel function and rectal irritation and pain. Characteristics of sexual activity, and sensitive knowledge of these, should inform treatment decision making and management of treatment effects.

Patterns of sexual behaviors themselves also often are different.^7,15,16 The assumptive reality of virtually all research and clinical information related to issues of sexuality, sexual function, and impact on relationships is that of married men in long-term, presumably monogamous relationships.^17,18 This "reality" leaves both gay and bisexual men and heterosexual men who are single (McCarthy¹⁹ is a sole exception related to single men) out of discussions of the impact of erectile dysfunction on sexual relationships. This is despite the fact that management of erectile dysfunction may be more complicated for gay, bisexual, and single heterosexual men. Although there are many gay couples of long standing,^15,16,20,21 gay men are decidedly less likely than heterosexual men to have a long-term, monogamous relationship as the exclusive venue for their sexual lives.^15,16,21 Thus, the importance of erectile function and the ways sexually related dysfunction may inhibit or disrupt intimate relationships, primary issues of concern both to the urologic oncology community and men who have faced prostate cancer, are very different for gay and bisexual men (and even more so for male-to-female transgender persons), and these differences should be carefully understood and addressed.

The difference in terms of likelihood of presence of a current long-term relationship also leads directly to the important differences of gay and heterosexual men in terms of another aspect found to be helpful for dealing with prostate cancer—social support. Many men discover they have prostate cancer because their wives encouraged them to have screening; most men turn first to their wives for guidance and emotional support in the difficult days or months of making treatment decisions; wives are the "first line of defense" for most men dealing with the acute effects of recovery from their treatments, and wives continue to be the primary support throughout the process of readaptation to being a prostate cancer survivor (and to dealing with the later stages of advanced disease, if that is the end result of their disease).^17,18 Of course, the stress of managing and trying to enhance the marital relationship and worrying about how one’s choices affect one’s spouse may also provide a negative aspect of a marital relationship. In any case, most heterosexual men, who have wives sharing their experience, have a distinctly different set of experiences and perspectives from both single heterosexual men¹⁹ and the majority of gay men who do not live with long-term partners. It is not that single heterosexual or gay men do not have social support,^15,20-22 but that the center of that support is different, and is less likely to be centered around a marital or marriage-like partner and more likely to be embedded within a network of friendships and the broader GLBT community. Moreover, we know very little about how male-to-male support differs from female-to-male support in partnered relationships. Of course, social support aspects will be different still among gay and bisexual men who are not fully public about their sexual orientation, or are not highly connected to the GLBT community by choice or circumstance. It is important to note that the overwhelming emphasis on wives will also be problematic for men who are partners for gay men with prostate cancer as well as for the gay men who do not themselves have spouse-like partners.

Finally, of critical importance for clinical practice, gay men are more likely to have difficulty dealing with the medical community of mainly heterosexually oriented urologists and oncologists.^23-26 GLBT persons may be wary of a real or feared homophobia and heteronormative focus of clinicians.²⁶ The fact that there is literally no specific attention in research or practice to dealing with prostate cancer as a gay or bisexual man, despite an array of potentially important differences in sexuality, sexual behavior, social relationships, and support, is illustrative of the difficulty that may accompany approaching one’s medical team as an explicitly gay or bisexual man.

This state of affairs has significant implications for the ways clinical oncologists can advise their prospective and current patients in relation to prostate cancer. These practice implications range from prevention, to advice about treatment choices, to post-treatment care. At each level, what is paramount is sensitivity and recognition of diversity of orientations and presentation of information and resources in ways that enable gay and bisexual men to be comfortable discussing their situations honestly and openly, and pursuing options that maximize their abilities to address prostate cancer in their lives.

First, preventive efforts should much more explicitly include the recognition of diversity in masculinities and sexualities among men as they approach the period in their lives when prostate cancer becomes a more likely health issue. Prevention and outreach regarding prostate cancer testing and early detection should be designed to exploit both traditional and nontraditional sources to ensure that information and resources are provided to men with different sexual orientation and gender representations. Major cancer organizations and resources, including books and pamphlets available in doctor’s offices and in the media, including the Internet, can include at least some reference to gay and bisexual issues and the impact prostate cancer has on this portion of the population. Just as importantly, GLBT health and men’s organizations and their resources can be assisted to provide more specific information to their members and to work with the broader medical community to ensure outreach and information efforts reach gay and bisexual men. Interestingly, although a number of gay men’s health-related sites on the Internet have information on prostate cancer, it is typically simply generic, basic information with no tailoring for their own audiences.

Second, urologists and oncologists should seek out information about how prostate cancer experiences and adverse effects of treatment may have differential impact on men with different sexual and gender orientations. In this way they can become more sensitive to potential variations in orientation, and so can explore sexuality and psychosocial needs, and provide precise and specific information and resources that address those areas of impact of prostate cancer. Working with GLBT communities, clinicians can become better informed and more able to ensure such frank discussions, and can address the ways that different treatment choices may impact gay and bisexual men in ways different from the heterosexual population.

Third, at both points of treatment choices and post-treatment life as prostate cancer survivors, it is essential to work with GLBT communities in another way—to ensure that gay and bisexual men facing prostate cancer can use their own support systems effectively. To do so may involve developing special resources for face-to-face support within the GLBT community (for example, support groups and resources akin to Man to Man one-on-one connections of gay and bisexual men). Such specialized GLBT-community–based resources should be complemented by efforts to sensitize existing support resources and support groups to the diversity of needs in men facing prostate cancer. One example is the inclusion of social support members of a man’s "team" other than wives within a support group arrangement, and exploiting rather than ignoring the kind of friend- and community-based support systems more characteristic of the GLBT community. In addition, although face-to-face support groups may provide excellent informational and emotional support, there is unlikely to be a critical mass for specialized gay and bisexual groups outside of major metropolitan areas with significant GLBT populations. It is also likely that some men may either not be public enough about their sexual orientation or simply not inclined to participate in such groups, and so it is important to facilitate online support, which has been found to be both ubiquitous and valuable to many men.^27,28 I am aware of one such group, within Yahoo groups, but more are needed and more access to them should be made readily available. Again, clinical oncology and urology offices can serve a role as a mechanism for informing gay and bisexual men dealing with prostate cancer of such options.

Finally, it is essential to develop sound, clinically relevant research to undergird all of the efforts that can be made at the clinical practice level. Sound information about the knowledge, activities, needs, resources, and coping strategies of middle-aged and older gay men surrounding issues of prostate cancer is critically needed. Descriptive research can provide the grounding for clinical oncologists and related health professionals, most of whom are exclusively heterosexual, to be able to better recognize the diversities of different masculinities and the needs and resources of individual men, and to connect those men to appropriate information and support for sound decisions about prevention, treatment, and survivorship.

Research, outreach, and treatment related to prostate cancer focused on the gay community are urgently needed. It is important to recognize that doing so will not only be a much needed service to the GLBT portions of the population, but it will also provide another important window into better understanding the effects of prostate cancer on gender identity, sexuality, and sexual activity, and social support among all men, including the exclusively heterosexual population. Diversity of experiences and needs across all men who are dealing with or may deal with prostate cancer can, thus, be incorporated more fully into clinical practice.

Author's Disclosures of Potential Conflicts of Interest

The author indicated no potential conflicts of interest.

Acknowledgment

I thank Marysol Asencio for the input and support for this commentary, and the Journal of Clinical Oncology reviewer of a previous version for his or her comments.

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This Article Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Blank, T. O. Search for Related Content PubMed PubMed Citation Articles by Blank, T. O. Social Bookmarking                            What's this?