“A Gay Man’s Guide to Prostate Cancer,”
a special double issue of the Journal of Gay and Lesbian Psychotherapy, is issued. Edited by Gerry Perlman, Ph.D., Program Director, Malecare Gay Prostate Cancer Program ( http://www.malecare.com ) and Jack Drescher, MD
, this comprehensive work is today released in Journal form and will be released as a book in two months (see amazon.com for your advance order). I have reprinted below the table of contents and abstracts, as provided by the authors and publisher. This obviously is a seminal event in public discourse and education on Gay Men and Prostate Cancer. I hope all of you will partake. Darryl Mitteldorf, LCSW Director, Malecare, Inc.
Journal Of Gay and Lesbian Psychotherapy
Voume 9, Number 1/2
THE OFFICIAL JOURNAL OF THE ASSOCIATON OF GAY AND LESBIAN PSYCHIATRISTS
FOR TABLES OF CONTENTS OF PREVIOUS ISSUES OF JGLP GO TO:
Special Double Issue
A Gay Man’s Guide
to Prostate Cancer
Guest Edited by Gerald Perlman, Ph.D.
Editor-in-Chief: Jack Drescher, M.D.
1. What Gay Men (and Those Near and Dear to Them) Need to Know About Prostate Cancer
Introduction by Gerald Perlman, PhD and Jack Drescher, MD (text below)
2. Prostate Cancer and the Gay Male
Vincent M. Santillo and Franklin C. Lowe, MD
Abstact: This is an overview of the causes, screening guidelines and treatments for prostate cancer. The paper also highlights issues of particular concern to gay men including the potential effect of testosterone supplements, HIV status, anal sex and its impact on PSA testing, and the potential change in sexual response during anal sex resulting from the removal of the prostate. Issues of doctor-patient communication as they specifically relate to the gay prostate cancer patient are explored.
3. A Gay Urologist’s Changing Views on Prostate Cancer
David Cornell, MD
Abstact: As the voluminous data linking PSA and pathology results have accumulated, more refined diagnostic algorithms have resulted. These paradigms may lead to diagnosis of extremely low volume prostate cancers. The author offers his own conclusions in regard to diagnostic tests, treatment options, and managing lifestyle-impacting side effects of treatment. He offers observations from his own practice as an openly gay urologist about the ways in which prostate cancer affects gay men and his development of an Internet group for gay men with prostate cancer. The importance of active involvement in one’s diagnosis and treatment is also stressed.
4. The Ups and Downs of Gay Sex After Prostate Cancer Treatment
Stephen E. Goldstone, MD
Abstact: Although, the diagnosis of prostate cancer is devastating, the disease is highly treatable. Treatment, however, does have side effects that can drastically affect sexual function-both from a physiologic and psychological standpoint. This problem can be particularly difficult for gay men to deal with as many are too afraid or embarrassed to discuss altered sexual function with their physicians and sexual partners. Physicians may incorrectly assume that an unmarried male patient is not sexually active when he may, in fact, be very sexually active. Sexual dysfunction after prostate cancer treatment can include impotence or a weak erection, failure to ejaculate and anal discomfort. Radiation therapy may produce impotence that is of gradual onset often beginning after treatment has terminated. Surgery can produce impotence immediately after the operation that can gradually improve over time. External beam radiation can also affect a gay man’s ability to have anal sex because of bleeding, diarrhea and discomfort. Younger men, men with less extensive prostate cancer and those who have had an active sex life before developing prostate cancer are less likely to experience difficulties with sexual function after cancer treatment. This article discusses treatment options for sexual dysfunction including medication, sexual aids, and surgery to restore erections. Communication between sexual partners and physicians is also crucial for dealing with alterations of sexual function. Sex with another man did not cause the prostate cancer and it will not cause it to return.
5. Psychotherapy with Gay Prostate Cancer Patients
Darryl Mitteldorf, LCSW
Abstact: Prostate cancer treatment should run along two parallel tracks: (1) reducing the biological threat of the disease and (2) reducing the psychological symptoms which ensue from internalizing the diagnosis and undergoing physical treatment. Many patients diagnosed with prostate cancer report symptoms of both depression and anxiety. Using examples from his psychotherapy practice, the author depicts and offers treatment strategies for the psychological reactions to diagnosis, treatment, and the consequences of treatment as they affect the gay man struggling with prostate cancer. Prostate cancer in gay men often intersects with the social issues of minority status, discrimination and stigmatization. As gay men navigate the heterosexually biased world of prostate cancer treatment, they must also confront potential problems of stigmatization, including scarring, ejaculation problems, erectile dysfunction, and HIV/AIDS envy. The author stresses the need for gay oriented programs and gender bias free materials as both appropriate and empowering to the community of all prostate cancer patients and their families.
6. Prostate Cancer, The Group, and Me
Gerald Perlman, PhD
Abstact: The paper discusses a psychologist’s experience of being diagnosed with prostate cancer and recounts what it is like for a gay man negotiating the heterosexually assumptive medical world. The paper goes on to relate the author’s transition from self-help group participant to facilitator of a gay men’s prostate cancer support group. The dynamics and concerns of gay men with prostate cancer within the context of a self-help group are described. Among the topics covered in such groups are gay identities, sexual behaviors and attitudes, feelings of helplessness, anger and loss, HIV/AIDS considerations, partner issues and adaptation.
FROM THE PERSPECTIVE OF GAY MEN WITH PROSTATE CANCER
7. Prostate Cancer and Sex
Abstact: A sexually active Latino gay man describes how the surgical removal of his prostate gland affected his thoughts, feelings, attitudes and activities about sexuality in general and specifically about how the physical changes he experienced engendered emotional changes in his own struggles with sex and masturbation. The author focuses on the experience of orgasms without ejaculation, his changing views and experiences of sex, the feelings of aging engendered by a diagnosis of prostate cancer, and his search for support after diagnosis and treatment.
8. Surviving Yet Another Challenge
Abstact: Describing himself as a physically fit and sexually-active African-American gay man of mature years, and having survived more than a decade of being HIV-positive, the author writes about being faced with another significant and completely new challenge to his health and quality of life: prostate cancer. He describes his choice of treatment and road to recovery in the context of his own personal philosophy of life.
9. Living with Prostate Cancer: One Gay Man’s Experience
Abstact: The author, a gay man diagnosed with prostate cancer at age 48, describes his experience deciding on a course of treatment and coping with sexual dysfunction following a prostatectomy. His experience was made more difficult by ignorance in the medical community, the straight community and the gay community. Frustrated by the absence of a source of fully accepting and understanding support, he started his own support group for gay men with prostate cancer.
10. Identity and Prostate Cancer: Comments on a Messy Life
Abstact: The author’s image of his body as small and weak was formed as a child but has remained with him although he is no longer physically weak. At times of emotional stress, he is susceptible to poor body image. A radical prostatectomy done after being diagnosed with prostate cancer eliminated the reliability of the author’s erections and gravely affected his identity. In his recovery from surgery, the author realized that having reliable erections, not as a condition to sexual pleasure but simply having them, was a part of his identity. In the aftermath of cancer and major surgery, he doubts that his body will appear appealing to other gay men. In light of the after-effects of radical prostatectomy, and in consideration of intimations of mortality, he worries that he will not be loved.
11. Prostate Cancer at Age 84
Abstact: A gay man is first diagnosed with prostate cancer at age 84. The cancer is aggressive and requires treatment. He struggles with the choice of treatment. Surgery is inadvisable because the cancer has already advanced beyond the capsule, and surgery raises the danger of possible metastasis. Preservation of erectile potency is ruled out as a cause of concern, since he is no longer sexually potent. Due to the lack of knowledge and experience (as opposed to present-day advances) radiation, in its form at that time, is ruled out. There was danger of radiation burns to adjacent healthy tissue. Chemotherapy was not recommended to him at that time. Patient settled on hormone therapy, deciding that he could manage the consequences of hormonal castration, even though his doctors never discussed his homosexual lifestyle with him. This oversight seemed less important at the time, because the patient was already impotent. Patient’s overriding concern was with the formation of a living situation or home with another man, for the remainder of his life.
12. Together With Prostate Cancer
Robert P. Parkin and Howard Girven
Abstact: Each member of an older gay couple describes the experience ofmaking the decision to treat their respective prostate cancers using proton beam radiation. They were in the same hospital at overlapping times. Each, in turn, discusses his reaction to treatment at Loma Linda University Medical Center and the importance of a team approach to treatment. The lack of attention to gay-related issues are addressed. The authors discuss the effect of prostate cancer, its treatment and aging on their sexual life together.
13. A Gay Man and His Partner Face His Prostate Cancer Together
Abstact: A middle-aged gay man describes his experience and that of his partner in facing the diagnosis and treatment of prostate cancer. The author describes his reactions to various urologists and support groups. The author offers a candid look at the sexual and psychological issues he and his partner faced when dealing with prostate cancer and the side effects of its treatment. The paper highlights the importance of patient involvement in treatment.
14. Prostate Cancer Diagnosis and Treatment of a 33-Year-Old Gay Man
Vincent M. Santillo
Abstact: This is a personal account of a 33 year-old gay man’s discovery of his prostate cancer, its treatment, his recovery and the effect it had on his life. The paper underscores the importance of physician-patient communication, informed consent for patients, and involving the patient’s partner when treating prostate cancer. In addition to dealing with incontinence and post-operative depression, the author recounts the many steps he undertook to treat erectile dysfunction as well as the difficulties that caused for him and in the relationship with his partner of twelve years.
Gerald Perlman, PhD
From the Introduction
What Gay Men (and Those Near and Dear to Them) Need to Know About Prostate Cancer
by Gerald Perlman, PhD and Jack Drescher, MD
There was a time, not too long ago, when having cancer was considered so shameful that those individuals diagnosed were treated by others—and regarded themselves—as social pariahs. Fortunately, much has changed. For example, today one finds numerous popular articles and books written about prostate cancer. Prominent figures from politics, sports, the military and entertainment—Rudy Giuliani, Joe Torre, Norman Schwartzkopf, Andy Grove and Harry Belafonte to name a few—have gone public with their personal stories of coping with prostate cancer. All this is good news, as celebrity stories have brought prostate cancer out of its closet of shame, stigma and ignorance and into the open daylight. In this way, those men who are affected can get appropriate diagnosis, treatment and support.
There are some disturbing statistics. Most people probably do not know that prostate cancer is the second leading cause of cancer deaths in men, causing more than 300,000 deaths each year. A man has a one in six (15.4%) chance of developing invasive prostate cancer in his lifetime. It is estimated that approximately 189,000 new cases will be diagnosed in 2004. Nor is it just an older person’s disease—the age range of those diagnosed spans from men in their early 30s through those in their 90s.1 In the last decade, medicine has advanced considerably in diagnosing and treating prostate cancer, although what constitutes the best approach to treatment is controversial.
Despite these alarming statistics and the advantages of early detection, most men either know very little about prostate cancer or they choose not to know about it—often until it is too late. This selective inattention is entirely comprehensible. The historical legacy of stigmatizing cancer keeps the subject, even discussions about preventing it, out of everyday awareness.
Among gay men, the subject of prostate cancer is further complicated by the intersecting stigmata of both cancer and homosexuality. Most people do not want to talk about prostate cancer and most straight people do not want to talk about homosexuality. It is therefore not surprising that the overwhelming majority of personal and professional publications about prostate cancer are written by, for and about heterosexual men and their female partners. If prostate cancer, in general, is off most people’s radar screen, then gay men with prostate cancer are a truly invisible species.
An invisible clinical population is a troublesome fact, given that clinical experience has shown that most men—gay or straight—are traumatized upon being told they have prostate cancer. Even before the shock of diagnosis abates, every man is confronted with the task of finding the right doctor(s), choosing the right treatment(s), and inevitably dealing with the unwelcome side effects caused by those treatments. These facts require that the man with prostate cancer be patient, informed, persistent, and courageous. It also requires, in the opinion of both the lay and professional contributors to this volume, that he be able to find emotional and psychological support from his partner, his friends, and his doctors. Toward that end, this monograph issue of the Journal of Gay and Lesbian Psychotherapy aims to address and shed light upon the needs of that invisible population of gay men (and their partners) confronting prostate cancer.
This monograph issue is aimed not only at the mental health professionals who read the JGLP and who may treat gay men with prostate cancer, it is also intended to the patients themselves. It is also intended to be helpful to the partners, family members, support systems and physicians of men with prostate cancer.
The first section addresses prostate cancer from the perspective of health and mental health professionals. The second section consists of papers written from a personal point of view: articles by gay men of diverse ages, races, and ethnicities describing their own experiences with prostate cancer. The final section is a glossary of technical terms.
Vincent Santillo and Frank Lowe, MD, begin the professional section of papers with “Gay Men and Prostate Cancer.” They discuss the basics of prostate cancer with an overview of the causes, diagnosis, screening guidelines and treatments for prostate cancer. They highlight issues of particular concern to gay men, including the potential effect of testosterone supplements, HIV status, anal sex and its impact on PSA testing, and the potential change in sexual response during anal sex resulting from the removal of the prostate. They explore issues of doctor-patient communication as they specifically relate to the gay prostate cancer patient.
Among health professionals, the diagnosis and treatment of prostate cancer often raises more questions than it answers. Consequently, Santillo and Lowe describe a different treatment bias than does David Cornell in “A Gay Urologist’s Changing Views on Prostate Cancer.” Dr. Cornell traces the history of prostate cancer diagnosis and treatment through the 1980s and 90s to the present. He describes some of the unique concerns that gay men have when consulting with a urologist and making treatment decisions. He also writes about the need for and his development of a gay prostate cancer website. Dr. Cornell argues for the aggressive treatment of prostate cancer taking into account the need to be aware of lifestyle issues.
In “The Ups and Downs of Gay Sex After Prostate Cancer Treatment,” Steven Goldstone, MD, addresses practical questions regarding gay sex after a man has been treated for prostate cancer. He also addresses some of the concerns of the partners of gay man with prostate cancer. Dr. Goldstone offers the reader a practical and matter of fact primer of what may happen during and what to do after prostate cancer treatment.
In “Psychotherapy with Gay Prostate Cancer Patients, Darryl Mitteldorf, CSW, uses examples from his own practice to highlight psychological issues that surface in individual psychotherapy with gay men diagnosed and treated for prostate cancer. Many of his patients report symptoms of both depression and anxiety. Mitteldorf sees the goal of psychotherapy as reducing the psychological symptoms that result from internalizing the diagnosis and undergoing physical treatment. He warns that as gay men navigate the heterosexually biased world of prostate cancer treatment, they must also confront potential problems of stigmatization, including scarring, ejaculation and erectile dysfunction, and HIV/AIDS envy.
The last professional paper is Gerald Perlman, PhD’s “Prostate Cancer, The Group, and Me.” However, it is both a professional and personal paper. Dr. Perlman writes of his own journey as a gay man dealing with his own prostate cancer that led to his becoming a facilitator of a support group for other gay men with the same disease. He describes the dynamics and concerns of gay men with prostate cancer within the context of a self-help group. Among the topics covered in such groups are gay identities, sexual behaviors and attitudes, feelings of helplessness, anger and loss, HIV/AIDS considerations, partner issues and adaptation.
The second section of personal accounts begins with Roberto Martinez’s “Prostate Cancer and Sex.” Martinez, a self-described “sexually active Latino gay man,” tells of how the surgical removal of his prostate gland affected his thoughts, feelings, attitudes and activities about sexuality in general. He also speaks more specifically about how the physical changes he experienced engendered emotional changes in his own struggles with sex and masturbation.
Lidell Jackson’s “Surviving Yet Another Challenge,” also talks about prostate cancer’s challenge to his sexuality. Jackson, a self-proclaimed sex-positive gay man, compares the challenge of prostate cancer to the struggle he went through when he sero-converted. As a man of color, Jackson feels particularly strong about alerting his Black brothers to their increased risk of developing prostate cancer.
Jerry Harris had his radical prostatectomy many years prior to the other contributors. In, “Living with Prostate Cancer: One Gay Man’s Experience,” he tells of his difficulties with the medical community and of his struggle with sexual dysfunction following his surgery. Having looked in vain for support, he describes the formation of his own gay mens’ prostate cancer support group. Harris, finally, tells of finding a rainbow at the end of his long struggle.
In “Identity and Prostate Cancer: Comments on a Messy Life,” the pseudonymous “Mark Miller” laments what he calls “the devastation” to his sense of self and body image following a radical prostatectomy. He remarks on his own fears of being unacceptable and unappealing in a gay community that he views as being consumed with youth and beauty. In contrast, prominent psychiatrist and psychoanalyst Bert Schaffner, MD, describes how dealing with “Prostate Cancer at age 84.” did not alter his sexual identity. Dr. Schaffner writes that he feels as gay as ever, and in a way feels freer to be more related and affectionate.
In “Together with Prostate Cancer,” Robert Parkin and his partner Howard Girven present their particular experience as an older gay couple confronting prostate cancer. Theirs is a unique tale of their respective experiences seeking treatment for their prostate cancers during overlapping times at Loma Linda University Medical Center. They discuss what it was like being gay in that setting and how their sex life have evolved following treatment.
The impact on couples is taken up further by Greg Higgins in “A Gay Man and His Partner Face Prostate Cancer Together.” Higgins writes about his experience with the medical profession and the importance of being proactive about one’s treatment as well as the need to look for support. He devotes a good portion of his paper to the effect his cancer has had on his relationship of 10 years to a man more than 20 years his junior.
Those who think prostate cancer is just an older man’s disease will be startled to read Vincent Santillo’s “Prostate Cancer Diagnosis and Treatment of a 33 Year Old Gay Man.” Santillo takes the reader on a personally revealing journey of his struggle with prostate cancer, how it changed him and how it affected his relationship of 12 years.
This issue concludes with Dr. Perlman’s glossary of technical terms. Hopefully it will serve as a reference guide and resource for gay men, their partners and family members who are coping with prostate cancer.
The field of prostate cancer is constantly changing. New information is
being published daily; views on diagnosis and treatment may vary according
to the practitioner/researcher. Statistics, by their very nature, are
open to varying interpretations. And each man’s experience is unique to
him. The goal of this volume is to increase people’s knowledge base as
they make medical choices. As with any such medical and psychological
events, the authors and editors recommend that men with prostate cancer
make all their medical choices in consultation with a qualified physician
that they trust.
Malecare is the only national nonprofit organization that responds to gay men with prostate cancer. With branches across the United States and in several foreign countries, Malecare may be contacted on the Internet at www.malecare.org .