There have been thousands of studies devoted to prostate cancer, but very few have focused on trying to understand the experiences of gay and bi men with prostate cancer. A new book, Gay & Bisexual Men Living with Prostate Cancer: From Diagnoses to Recovery aims to target these communities, whose unique stories often get lost in medical studies.
Edited by Jane Ussher, Janette Perz, and B. R. Simon Rosser, the book is the most current and comprehensive to date on the subject. Providing an overview of research and treatments as well as powerful portraits of gay and bi men living with prostate cancer, the editors intend to assist those going through treatment and their medical professionals, whose private practices often deal more frequently with straight white men's experiences. Dr. Rosser, a professor and director of HIV/STI Intervention Studies at the Division of Epidemiology & Community Health University of Minnesota School of Public Health, explains why we need to talk about this health risk more.
The Advocate: What's missing from the dialogue as it pertains to men's prostate health and aging?
Dr. Rosser: It strikes me as surprising that gay men know so little about the prostate and its role in men's sexual function and pleasure -- and also about what is normal aging and what to expect. In many areas of sexual health -- for example HIV prevention and STI risk -- our community has done a remarkably good job of educating each other. But then we hit these areas that are perhaps more emotionally difficult or socially taboo, and there is a huge silence.
Is there a barrier to gay and bi men's access to education and care?
I think the biggest barrier in education [and] care has been confusion, secondary to changing recommendations on PSA testing and treatment.
That's the test for prostate-specific antigen in the blood that is used to screen for prostate cancer. What changed?
Ten years ago, the recommendation for men with a family history of prostate cancer was annual PSA testing and the emphasis, if diagnosed, was on treatment. Now, in response to concerns about over-diagnosis and unnecessary treatment, the recommendations have swung the other way. I'm not sure men know what to do with a recommendation to talk to a physician.
How does being out impact the healthcare men get?
For gay and bisexual men, I think an additional barrier that limits access to appropriate education is not disclosing one's sexual orientation to their cancer specialist. Disclosure is really important for at least two reasons: First, any cancer diagnosis is a really frightening experience that you typically go through alone. Feeling known can reduce the experience of alienation. And we know that there are common questions about gay sex post-treatment that don't get answered if the doctor doesn't know their patient's sexual orientation.
The book is for men but also for their clinicians, right?
Part of the reason we wrote the book is that currently there are no training programs to educate doctors about the needs of gay prostate cancer patients, clinics do not routinely collect data on patient sexual orientation, and there are major questions still to be answered about what kinds of treatment work for restoring gay sex. We are about to conduct the first study to identify whether sexual rehabilitation even works for sexual minority men. So there's a lot of research that needs to be done first to build the evidence base doctors need to help their patients.
That said, my own experience of being diagnosed has been very positive. Finding a doctor you feel comfortable with, who is open to answering questions, and who views the patient more holistically and long-term -- rather than just a body to remove disease [from] -- is critical. If my doctor doesn't know something, or if the answer is not known, we have an honest relationship and work together to identify a good plan of action.