Gay & Bisexual Men Living with Prostate Cancer

GAY & BISEXUAL MEN
LIVING WITH PROSTATE CANCER

From Diagnosis to Recovery

Edited By
Jane M. Ussher
Janette Perz
B.R. Simon Rosser

352 pages
Paperback, $45.00 / £37.95 ISBN: 9781939594259
Hardcover, $95.00 / £79.95 ISBN: 9781939594242
E-book, $41.99 / £34.95 ISBN: 9781939594266

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This book provides an overview of research and practice dealing with the specific needs of gay and bisexual men living with prostate cancer, as well as the special psychosocial needs of their partners. The intention is twofold: to provide insight into the unique experiences and concerns of gay or bisexual men living with prostate cancer in order to inform and assist future research, clinical practice and supportive care, and policy; and to ensure that the needs of gay and bisexual men are recognized
and advanced on the mainstream prostate cancer agenda. Featuring both cutting-edge research and powerful portraits of gay and bisexual men living with prostate cancer, this book will be indispensable for health care, oncology, and mental health practitioners who seek to address their specific experiences and challenges.
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TABLE OF CONTENTS

FOREWORDFree Chapter
Jonathan Bergman and Mark S. Litwin
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INTRODUCTIONFree Chapter
Jane M. Ussher, Janette Perz, and B.R. Simon Rosser
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SECTION ONE: Gay and Bisexual Men’s Experiences of Prostate Cancer: What Does Research Tell Us?


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1. Understanding Prostate Cancer in Gay, Bisexual, and Other Men Who Have Sex with Men and Transgender Women: A Review of the LiteratureFree Chapter
B.R. Simon Rosser, Shanda L. Hunt, Benjamin D. Capistrant, Nidhi Kohli, Badrinath R. Konety, Darryl Mitteldorf, Michael W. Ross, Kristine M. Talley, and William West

Prostate cancer in sexual and gender minorities is an emerging medical and public health concern. The purpose of this review is to summarize the state of the science on prostate cancer in gay, bisexual, and other men who have sex with men (GBM) and transgender women (TGW). We undertook a literature review of all publications on this topic through February 2017. With 88 unique papers (83 on prostate cancer in GBM and 5 case reports of prostate cancer in TGW), a small but robust literature has emerged. The first half of this review critiques the literature to date, identifying gaps in approaches to study. The second half summarizes the key findings in eleven areas. In light of this admittedly limited literature, GBM appear to be screened for prostate cancer less than other men, but they are diagnosed with prostate cancer at about the same rate. Compared to other men, GBM have poorer urinary, bowel, and overall quality-of-life outcomes but better sexual outcomes after treatment; all these findings need more research. Prostate cancer in TGW remains rare and underresearched, as the literature is limited to single-case clinical reports.

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2. Threat to Gay Identity and Sexual Relationships: The Consequences of Prostate Cancer Treatment for Gay and Bisexual Men
Jane M. Ussher, Janette Perz, Duncan Rose, Gary W. Dowsett, and David M. Latini

This chapter considers the effect of prostate cancer treatment on gay identity and sexual relationships. A total of 124 gay and bisexual men (GBM) with prostate cancer and 21 male partners completed an online survey, and a subsample of 46 men with prostate cancer and 7 partners also took part in a one-on-one interview. Erectile dysfunction, reported by 72% of survey respondents, was associated with reports of emotional distress, negative effect on gay identities, and feelings of sexual disqualifcation. Other sexual concerns included climacturia, pain or loss of sensitivity during receptive anal sex, non-ejaculatory orgasms, and reduced penis size. Many of these changes have particular signifcance in the context of gay sex and gay identities, and they can result in feelings of exclusion from a sexual community central to GBM’s lives. Researchers and clinicians need to be aware of the meaning and consequences of sexual changes for GBM when designing studies to examine the influence of prostate cancer on men’s sexuality, advising GBM of the sexual consequences of prostate cancer, and providing information and support to ameliorate sexual changes.

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3. Integrating Post-Prostatectomy Sexuality: The Couple’s Journey
Daniela Wittmann

This chapter addresses the sexual recovery of gay and bisexual men (GBM) with prostate cancer and their partners after surgery for prostate cancer. While the sexual function of the man with prostate cancer is primarily affected, the partner is also affected emotionally, and the couple’s sexual experience is changed. Both members of the couple will probably experience grief about sexual losses. In the process of recovery, they will have to learn to communicate more explicitly about their sexual needs and may need to employ novel strategies to stay connected and maintain a satisfying level of eroticism. Currently, little support is available for GBM couples. Knowledge development is needed to ensure that GBM couples’ sexual recovery proceeds toward maximizing their sexual health after prostate cancer treatment.

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4. “My partner is my family”: An Interdependence and Communal Coping Approach to Understanding Prostate Cancer in Same-Sex Male Couples
Charles Kamen and Lynae Darbes

In this chapter, we describe a model for understanding the process by which same-sex male couples cope with prostate cancer. The model incorporates individual factors (e.g., sociodemographics, perceptions of cancer treatment), couple- and relationship-level factors (e.g., relationship quality, communication), and prejudice and stigma, with the goal of explaining health behavior change and treatment outcomes among sexual minority men with prostate cancer. The interplay of the various factors in the model is explored in the context of communal coping — a dyadic process thought to increase a couple’s ability to respond positively to a health threat. We also discuss the importance of cancer care providers, who are a crucial factor in the patient’s experience of cancer treatment. Challenges for providers include integration of same-sex partners into cancer treatment, even though partner involvement is a well-established predictor of improved patient outcomes for heterosexual patients. Throughout the chapter, we provide empirical support from the current literature, as well as quotes from a qualitative study of LGBT cancer patients, which serve to illuminate the issues discussed. Our aim is to provide a conceptual framework for future investigations into the role of partners, facilitate interventions for same-sex couples who are coping with prostate cancer, and ultimately to improve the physical and psychological health of this underrepresented and understudied population.

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5. Psychological Adjustment in Gay and Bisexual Men after Prostate Cancer
Michael A. Hoyt and Brett M. Millar

The experience of prostate cancer can exact a psychological and physical toll. Gay and bisexual men (GBM) have been underrepresented in prostate cancer care and research and represent a subpopulation at high risk for poorer health-related quality of life and psychological adjustment following diagnosis. The physical and psychological demands of prostate cancer present new circumstances to which patients and loved ones must adjust, and GBM disproportionately experience risk factors for impaired physical and emotional functioning, including general and minority-related stressors, unmet healthcare needs, and social isolation. Psychological adjustment to chronic disease is a complex and multidimensional process that constitutes more than merely the absence of psychopathology and includes both positive and negative domains. Theories of stress and coping, self-regulation, and personal growth have informed the understanding of the dynamics of psychological adjustment and its determinants. These, coupled with considerations of the unique risk and resilience factors experienced by GBM, will inform a more inclusive model of psychological adjustment to prostate cancer. This chapter integrates existing theories of psychological adjustment to chronic illness with theories of minority stress and observations from focus groups comprising GBM with prostate cancer to identify influences on adjustment across the cancer trajectory.

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6. The Social Dimensions of Prostate Cancer in Gay Men’s Sexuality
Gary W. Dowsett, Duane Duncan, Andrea Waling, Daniel R. du Plooy, and Garrett P. Prestage

Much of the research on men and prostate cancer has neglected gay and bisexual men. Assumptions are made that gay men are men too, so they must have the same experiences as heterosexual men. Recent research, however, has shown marked differences between gay and bisexual men and heterosexual men in diagnosis, treatment, care, and support. This chapter considers the recent research that is beginning to understand gay men’s different experiences of prostate cancer diagnosis and treatment, arguing that a focus on the social dimensions of gay men’s sexuality is needed. Three issues are explored: gay sex and sexuality, gay relationships and gay community, and HIV infection.

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7. Gay Men and Prostate Cancer: Learning from the Voices of a Hidden Population
Murray Drummond, James Smith, and Shaun Filiault

Ten years ago, we published a study on gay men and prostate cancer. The paper gave a voice to gay men with prostate cancer whose voices had been largely unheard or, in some respects, silenced. Fortunately, there has been a groundswell of work in this area since the publication of our study. This chapter begins with a personal vignette of the frst author, Murray Drummond, to provide important contextual information for how gay men and prostate cancer are perceived at a primary healthcare level. We then draw on contemporary health promotion scholarship to discuss what is known about men’s health promotion and describe how this promotion intersects with gay men and prostate cancer. We then use some of the concerns voiced by the original group of gay men with prostate cancer in our study to illuminate the key issues they faced — and in many cases continue to face. We then reflect on some of the legal aspects associated with these concerns in the face of the rapidly changing landscape of LGBTQI rights (and lack thereof) in contemporary Western cultures. We conclude by describing a way forward in light of the sociocultural, legal, and physical health concerns these men face with respect to their illness.

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SECTION TWO: Cancer Care and Support For Gay and Bisexual Men with Prostate Cancer


8. Lack of Information and Unmet Needs: Gay and Bisexual Men’s Sexual Communication with Healthcare Professionals about Sex after Prostate Cancer
Duncan Rose, Jane M. Ussher, and Janette Perz

Although sexual changes after prostate cancer have specifc meanings and consequences for gay and bisexual men (GBM), little is known about how GBM navigate sexual well-being support. We surveyed 124 GBM with prostate cancer and 21 male partners, and interviewed a subsample of 46 GBM and 7 male partners, to examine GBM’s experiences of sexual communication with healthcare professionals after the onset of prostate cancer. GBM perceived a number of defcits in healthcare professional communication: heterosexuality of GBM patients was often assumed; sexual orientation disclosure was problematic; and GBM perceived rejection or lack of interest and knowledge from a majority of healthcare professionals with regard to gay sexuality and the effect of prostate cancer on GBM. Facilitators of communication were an acknowledgment of sexual orientation and exploration of the effect of prostate cancer on GBM. To improve support for GBM with prostate cancer, we conclude that healthcare professionals need to address issues of heterocentrism within prostate cancer care by improving facilitation of sexual orientation disclosure, recognizing that GBM with prostate cancer may have specifc sexual and relational needs, and increasing knowledge and comfort discussing gay sexuality and gay sexual practices.

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9. Prostate Cancer Treatment Decision-Making and Survivorship Considerations among Gay and Bisexual Men: Implications for Sexual Roles and Functioning
Gwendolyn P. Quinn, Matthew B. Schabath, and Clement K. Gwede

A man who identifes as a gay or bisexual man (GBM), or as a man who has sex with men (MSM), and who is diagnosed with prostate cancer may experience survivorship and sexual roles and functioning differently from a man who identifes as heterosexual or straight. Whether actual treatment decisions differ between gay or bisexual men and straight or heterosexual men is not known. The effects and consequences of prostate cancer treatment are typically experienced by all men, regardless of sexual orientation, but the concern and bother of treatment side effects in survivorship may have different manifestations. Partnered men of all sexual orientations may have improved survivorship over men not in relationships. Younger men, particularly younger GBM, may have poorer quality of life in cancer survivorship. Healthcare providers are encouraged to create safe and accepting environments for patients to disclose sexual orientation and gender identity and to make the appropriate clinical decisions based on this information with knowledgeable recommendations and strategies during treatment decision making and survivorship. In this chapter we review the published literature about GBM with prostate cancer, decision making when considering treatment options, symptom burden, and sexual roles and functioning in survivorship. Interspersed throughout the chapter are qualitative comments collected by our group from a series of surveys conducted among the LGBT community about their experiences with receiving general healthcare.

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10. Sexual Aids for Gay and Bisexual Men and Transgender Women after Prostate Cancer Treatments
Erik Wibowo and Richard Wassersug

Prostate cancer treatments can affect the sexual experience of individuals regardless of sexual orientation. While the absence of orgasm is a common result of most treatments for prostate cancer, some patients have reported experiencing multiple, more intense, or diffuse orgasm after prostate cancer treatment. Interestingly, many transgender women also claim similar orgasmic changes after sexual reassignment. In this chapter we discuss how some products that are marketed as sex aids or “toys” may facilitate sexual recovery after prostate cancer treatments. These products include external penile prostheses, penile sleeves, and penile support devices. We stress the relevance of having a partner or partners for satisfactory sexual recovery. This includes the importance of involving partners in selecting sexual aids and using the aids in a way that develops an erotic association between the aids and the partner. Statistically, gay men are more likely than heterosexual men to be unpartnered. Being single may be a contributing, but under-investigated, factor in the higher level of distress experienced by gay prostate cancer patients in contrast to their heterosexual counterparts.

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11. Experiences of Sexual Rehabilitation after Prostate Cancer: A Comparison of Gay and Bisexual Men with Heterosexual Men
Jane M. Ussher, Duncan Rose, Janette Perz, Gary W. Dowsett, and Andrew Kellett

In a study of sexual rehabilitation after prostate cancer, gay and bisexual men (GBM) were more likely than heterosexual men (79% versus 56%) to report having tried medical or other aids to address erectile dysfunction. GBM were also more likely to have tried more than one medical aid (GBM M = 1.65 aids, heterosexual men M = 0.83 aids), including medication, penile injection, penile implant, and vacuum pump, and to have sought information about sexual rehabilitation after prostate cancer on the Internet, through counseling, or through a support group. There were no differences between the groups in satisfaction with the use of sexual aids. Accounts of satisfaction described medical and sexual aids as indispensable in maintaining sexual functioning and relationships. However, the majority of men in the study described hindrances, both physical and social, associated with using medical or sexual aids, which resulted in discontinued use of such aids. These barriers were the perceived artifciality of medical and other sexual aids; loss of sexual spontaneity and necessity to plan for sex; physical side effects; failure to achieve erectile response; fnancial cost; and lack of access to sexual rehabilitation information and support.

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12. Illness Intrusiveness and Social Support in Gay and Bisexual Men with Prostate Cancer
Tae L. Hart, Crystal Hare, and David M. Latini

Although the literature on gay and bisexual men (GBM) living with prostate cancer has grown in recent years, little is known about the influence of social support and relationship status on illness adjustment in this group of men. The Illness Intrusiveness Theoretical Framework posits that the context of chronic illness, such as disease-related, treatment-related, and social factors, can either exacerbate or ameliorate the disruption of patients’ valued life activities. Using this framework, our study examined the relationship between positive social support and three domains of illness intrusiveness (relationships and personal development, sex and intimacy, and instrumental areas such as health, employment, and active recreation). Additionally, we examined how the association between social support and illness intrusiveness was affected by relationship status (i.e., being partnered or unpartnered). This cross- sectional research project recruited 92 self-identifed GBM from the online community and from local community centers that serve GBM. Participants completed a self-report packet of questionnaires online. Results showed that unpartnered (versus partnered) men reported less positive social support. We found that for unpartnered men, reporting greater positive social support was associated with less illness intrusiveness in two areas of their lives: relationships and personal development, as well as instrumental areas (health, fnance, recreation). However, greater positive social support was not associated with reduced illness intrusiveness in partnered men. Although our fndings cannot tell us whether positive support causes less illness intrusiveness, these data suggest that unpartnered GBM with prostate cancer seem to beneft from greater levels of positive social support. Healthcare providers need to assess the availability of instrumental and emotional support for unpartnered GBM, and they should be prepared to offer resources and to facilitate positive support.

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13. The Effects of Radiation Therapy for Prostate Cancer on Gay and Bisexual Men’s Experiences of Mental Health, Sexual Functioning and Behavior, Sexual Identity, and Relationships
William West, B. R. Simon Rosser, Benjamin D. Capistrant, BeatrizTorres, Badrinath R. Konety, Darryl Mitteldorf, Michael W. Ross, and Kristine M. Talley

As part of a larger study of prostate cancer in gay, bisexual and other men who have sex with men (GBM) in North America, we conducted individual semistructured telephone interviews with 6 GBM who received radiation treatment and 19 who underwent radical prostatectomy. GBM who underwent radiation treatment reported multiple sexual challenges similar to those published for men who underwent radical prostatectomy. Two key differences were identifed. GBM who received radiation reported additional bowel and urinary urgency challenges that were not reported by GBM who had radical prostatectomies, which had implications for receptive anal sex. Conversely, GBM who received radiation were less likely to report severe erectile dysfunction, anatomical changes, and total ejaculate loss than GBM with radical prostatectomies. Clinical implications include the importance of addressing these differences in sexual outcomes when discussing treatment options with GBM, possibly as part of a broader discussion of role-in-sex and how to minimize the negative effects of treatment.

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14. Toward a More Comprehensive Model of Prostate Cancer Care Inclusive of Gay and Bisexual Men and Transgender Women
Donald Allensworth-Davies, Thomas O. Blank, Brian de Vries,
and Emilia Lombardi

Despite the recent growth in cancer care research specifc to sexual-minority populations, comprehensive care models of prostate cancer inclusive of gay and bisexual men (GBM) and transgender women (TGW) are lacking. The prostate cancer care process is described as occurring in four phases: (1) screening, (2) diagnosis, (3) treatment, and (4) post-treatment and survivorship. Research in the past ten years has shown that while the biology of prostate cancer is similar regardless of sexual orientation or gender identity, the psychosocial needs of gay, bisexual, and transgender persons are quite different from those of their straight peers. In this chapter we describe a comprehensive care model for GBM, TGW, and others with diverse sexual and gender identities at risk for prostate cancer; the model includes these four phases and was informed by a national survey of gay prostate cancer survivors that we conducted.1 It is our hope that this model of prostate cancer care can be used as a foundation for both clinicians and GBM and TGW patients in understanding and addressing some of the unique needs at each stage of the prostate cancer care process.

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15. Malecare: Twenty Years of Innovation and Service to Gay and Bisexual Men and Transgender Women with Prostate CancerFree Chapter
Darryl Mitteldorf

This chapter tells the story of the world’s leading gay, bisexual, and transgender (GBT) prostate cancer psychosocial support group network, Malecare. Challenged to develop the world’s frst prostate cancer support group for gay men, a small group of social workers and psychologists developed a set of unique modalities to help GBT people with the psychosocial and sexual stressors associated with prostate cancer diagnosis and treatment. A new nonproft organization called Malecare was formed to create novel programs, using those new interventions to help underserved men diagnosed with cancer. During the last two decades, Malecare has become a source of medical innovation, healthcare change, and psychosocial understanding for all men diagnosed with cancer throughout the world.

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SECTION THREE: Personal Experiences


16. “Losing My Chestnut”: One Gay Man’s Wrangle with Prostate Cancer — Ten Years On
Gary W. Dowsett

This chapter documents my personal encounter with a prostate cancer diagnosis and initial treatment ten years ago. Such personal accounts can offer insight into health issues and concerns otherwise unrecognized in healthcare, along with the particular kinds of science and research that underpin them. Such accounts have been used extensively in health research and politics, particularly when affected communities have a stake and a need to right some wrong. I wrote this article with that aim in mind. It was written in 2008 at the request of the editor of the journal Reproductive Health Matters, Marge Berer, to contribute to a set of testimonials on cancer experiences for an issue of the journal focused on reproductive cancers.1 For this version, I have updated aspects to reflect changes in the prostate cancer feld and added a short afterword, “Ten Years On.”

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17. What about Me?
Ross Henderson

This is my personal account of having been diagnosed with prostate cancer (PC) at the age of 46. As a young man I was unaware of the physical, emotional, and psychological effects that accompany such a diagnosis as well as the ramifcations of radical prostatectomy. This chapter follows my journey, through the highs and lows of the experience, with particular focus on my involvement in the formation of the gay and bisexual men’s PC support group Shine a Light. I also aim to share information with those people receiving a PC diagnosis in the hopes of making their journey with the disease a little easier and more comfortable.

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18. An Invader in the Pleasure DomeFree Chapter
Perry Brass

This account is the frst in a series on a gay man facing prostate cancer originally published in Gay City News, edited by Paul Schindler. It covers the process of diagnosis and decision making about treatment from the perspective of Perry Brass, a gay activist and writer. This article discusses his emotional reactions to diagnosis, interactions with health professionals associated with diagnosis and treatment decision making, and the fnal decision made about treatment.

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19. Looking Back: Engaging Prostate Cancer as a Gay Man at the Turn of the Twenty-first Century
Gerald Perlman

This chapter reflects my experience with prostate cancer as a gay man seeking help in the painfully heterosexist environment of 2000. The narrative looks back at my feelings, my reactions, my concerns, and my revelations and awakenings as I struggled with my own confusing search for help, compassion, and understanding in an environment that was quite unfriendly to gay men. I write of my wrestling with issues of helplessness, identity, anger, sex, shame, and loss, and how I went from being a participant in a support group for gay men to facilitator of that group of courageous men, all of whom found themselves in a similar situation.

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20. A Shared Decision-Making Approach to Assessing Prostate Cancer Risk: A Gay Diary Case Study
B. R. Simon Rosser, William West, and Badrinath R. Konety

In the United States, prostate cancer screening and diagnosis are advancing a shared decision-making approach whereby the patient and physician, and possibly other key persons such as a spouse, jointly investigate, test, diagnose, and develop a treatment plan tailored to the individual’s specifc needs. This frst-person account uses a single-case, prospective-diary methodology to record the process from PSA testing to biopsy for a gay-identifed man experiencing shared decision making in the age of the electronic medical record. The chapter documents the questions, reactions, and decisions that are foremost in the patient’s mind as they occur. In addition, the involvement of the patient’s husband in the process and the specialist’s perspectives are summarized. The key fnding is that shared decision making has several strengths, including facilitating patient buy-in and physician-patient communication. Identifed weaknesses include the patient’s taking at least partial blame when a medical procedure is performed incorrectly, as well as the process progressing at a speed determined in part by the patient. In the age of electronically delivered results, many of the key results and decisions were delivered remotely, facilitated by e-mail communication between patient and physician.

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