Gay & Bisexual Men Living with Prostate Cancer takes an in-depth look at a big health issue that we don’t spend a lot of time talking about.
The book was edited by B. R. Simon Rosser, Jane M Ussher, and Janette Perz.
I caught up with B. R. Simon Rosser for a between-the-pages look at what the book tells us.
What was the inspiration or impetus to write this book?
We were each approached by the publisher, who recognised a need for a book on gay men and prostate cancer. There have only been two prior books published, and both were old and dated. For myself, I got interested in this area because my father died from it, and when my husband was diagnosed about seven years ago, I saw first-hand the effects of treatment, and learned how little was known about gay couples and prostate cancer. I was also diagnosed myself last year. So, it’s both a professional and deeply personal commitment for me.
Gay men talk a lot of health, but our attention is generally focused on sexual health and mental health. Why do you think we don’t talk much about prostate health in the context of gay men?
There’s at least three factors involved. First, we are a community focused on younger men and their needs. Two of the biggest, most common, dangers to gay men’s health are HIV/STIs and depression — both can be a life-long major issue, so that’s been an important and necessary focus of activism. Second, the prostate for gay men brings up all kinds of issues of receptive sex and anal pleasure, and there’s still a major stigma around these topics so it remains a taboo topic that lots of men avoid and some can’t talk about for fear of shame. Third, we’re men, and similar to straight men, many of us don’t think about or focus on our prostates until we start seeing some of the effects of ageing. As we age into our 50s and beyond, we start noticing that we need to get up at night, that urinating changes, and we start talking to doctors about whether or not to have a PA test. At that point, it’s finally on our radar.
Why hasn’t the clinical world turned their attention to the experiences of gay men who have encountered prostate cancer?
In fairness to clinicians, they can’t practice evidence-based medicine if we researchers aren’t doing the studies to answer the clinical questions. Recently, I interviewed urologists and oncologists in ten of the largest treatment centres in the US. All confirmed that they don’t collect data on sexual orientation as a standard part of intake. So we remain a hidden population unless we bring a male partner or out ourselves. Urology is also a very focused speciality which attracts doctors drawn to doing specialist surgery. Most specialists may be more interested in doing the best surgical techniques, than in actually talking and listening to patients.
Am I reading it correctly that your literature review suggests that engaging in anal sex may increase the risk of prostate cancer for gay men, but that hasn’t been conclusively established?
Correct. There’s only been a handful of studies looking at the effects of sex with men on prostate cancer, and the results conflict. For each study which says something sexual could be involved, two others fail to find the same finding. When that happens in science, it’s usually a sign either that there’s no risk from what’s being studied, that the risk is so small that it’s plays a very minor part, or that there’s some limitation in the scientific methods which is hiding what’s really going on. Clearly, we need more research since it’s such a basic question.
Am I reading it correctly that your literature review has found that HIV-positive men have a lower risk of prostate cancer than HIV-negative men? I was wondering whether you had any insights as to if the roll-out of PrEP might have an unintended consequence of helping to reduce the risk of prostate cancer for HIV-negative men?
To date, there’s been only one paper published on HIV status and prostate cancer, and they actually found an HIV positive status and use of ARVs to be protective. But that study didn’t measure or control for sexual orientation, so that’s a bias, and other factors like better access to medical care could have influenced the results.
I’m aware of other data which will be published shortly which shows the opposite. Since the forthcoming study is more rigorously designed and it makes better sense, I think our understanding will change.
In terms of the potential impact of PrEP, I suspect it would be very difficult to prove. Most gay men are not on PrEP. PrEP adopters tend to be younger, while prostate cancer is an older man’s disease.
Do we need to be thinking about how to better equip medical professionals to talk about gay sex, how the treatment for prostate cancer may impact the sex life of gay men, and how to try and navigate that?
Yes, and not just gay men but all patients. Only a minority of medical schools in the US even teach medical students how to talk about sex with patients, and even less, how to talk to sexual and gender minorities. This leaves many graduates ill-equipped to address their patient’s sexual health needs. Several gay or bisexual prostate cancer patients mentioned they sought care at a university-based hospital. When asked why, they said it was because they could assume the doctors and staff were more used to seeing gay patients and comfortable discussing the realities of treatment for gay men.
The personal accounts of gay men who had been diagnosed and treated for prostate cancer are particularly powerful. How did you identify men who were willing to share their story?
One of the great privileges of being a researcher is that we get to listen to others. Many of us have conducted qualitative studies where we interview gay men about their experience. It’s incredibly rich, powerful, and we can learn so much from them. Some of us are both researchers and patients, so we’re in a unique position to share our experience of this disease as well — hopefully to help our colleagues become more knowledgeable and effective in providing care.
What do you hope to achieve with the publication of this book?
We want to jump-start a conversation in our community, to improve care, and to empower gay and bisexual men living with prostate cancer with relevant helpful knowledge. More broadly, if we look at the demographics, the gay community is ageing. Now that we have effective treatments for HIV, there is a large cohort of gay and bisexual men in the age group where prostate cancer gets diagnosed. While prostate cancer is the most common invasive cancer in gay men, it’s still incredibly stigmatised and hidden. This is a really important, common, scary disease, that we need to talk about, and learn more about, if we’re going to be a healthy, loving and supportive community.
What’s the next step in this area of research?
We’re at a very exciting moment. The world’s first treatment study designed by and for gay and bisexual men living with prostate cancer has been funded by the National Institutes of Health in the US. It’s a nationwide online study out of the University of Minnesota designed to answer the question — “What kinds of sexual and urinary rehabilitation work best to restore gay and bisexual men’s functioning?” Anyone interested in knowing more or wanting to participate should contact Chris Hoefer at [email protected]
B. R. Simon Rosser, PhD, MPH, is a professor and clinical-research sexologist specializing in gay men’s health in the Division of Epidemiology and Community Health at the University of Minnesota School of Public Health, Minneapolis. He pioneered the study of sexual function and dysfunction in gay and bisexual men (GBM); most recently, he led Restore, one of the first NIH-funded studies of prostate cancer in GBM.
Harrington Park Press, distributed by Columbia University Press, is an academic, scholarly, and professional book publisher devoted to emerging topics in LGBTQ diversity, equality, and inclusivity.
We want to hear your opinion
“My first thought was — I’m dead.”
In 1985, Derek Canas underwent heart surgery to correct a congenital anomaly — he was three months old.
The surgery was a success, but 16 years later Derek was diagnosed with AIDS — he had acquired HIV as a result of a blood transfusion during the heart surgery.
Derek is now a DJ and a campaigner for HIV awareness. Derek shared his story with Mainly Male.
When you were first diagnosed, how much did you and your family know about HIV?
The only thing I knew at that time was a few memories of a Nick News episode years before. I was diagnosed in 2001. My first thought was — “I’m dead.”
Thankfully, I had a great doctor who told me that I would that I would be going to his funeral, that he wasn’t going to mine. I had an AIDS diagnosis and wasting syndrome — I was weeks away from death.
What sort of counselling and support was available to you when you first diagnosed?
Just at doctors’ appointments. I live in a small town, there were no support groups close by. Family and close friends became my support system.
Have you encountered any stigma or discrimination as a result of your status?
Yes — especially in the early days after diagnosis. It’s just part of living in a small town. The understanding of the virus is still stuck in the mindset of the early-90s. Sadly, that’s nationwide — public knowledge is really lacking in terms of HIV.
You speak publicly about HIV and educate people about the virus — do you ever feel like taking some time out? Do you ever feel like you don’t want to have to explain your status to people that you meet?
I don’t take time out for myself. My cardiologist hates that — I’m on my fifth pace-maker. I always welcome the opportunity to explain my HIV status. I wear it like a badge of honour. The virus nearly killed me, and I’ve fought back — I’m the one that’s kicking its ass now.
What advice or guidance would you give to someone who has been recently diagnosed with HIV?
The days after are rough — don’t be ashamed of the breakdown. You’ll feel better as your health gets better. It just takes time and patience.
Do you have any hints or tips for people on how to respond to HIV stigma or discrimination?
I use music to get me through. I’m a DJ, so I know how powerful music is on our minds and bodies. I always encourage people to find their music or movies — something that helps them laugh or get hyped-up.
Keep a calendar — put things on it, no matter how small — always look forward. Tomorrow can and will be better.
Everyone gets knocked down in life. It’s about how you stand back up.
Sharing the stories of our community
It’s not easy to talk about HIV, but talking about your experience can help to build your confidence and understanding of what HIV means for you. Your story can also help others who are processing their own experiences with HIV.
If you’d like to share your story with the readers of Mainly Male, please email [email protected]
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