Gay Men and Prostate Cancer: Invisible Diversity

Abstract

In their recent commentary on cancer care outcomes research, Ayanian et al 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 2004 and nearly two million prostate cancer survivors just in the United States, understanding shortand 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. 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. 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. 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%, 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. JOURNAL OF CLINICAL ONCOLOGY COMMENTS AND CONTROVERSIES VOLUME 23 NUMBER 12 APRIL 2