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
Photography that embraces naked men
“Stop comparing ourselves to strangers on the internet…”
I caught up with photographer Anthony Patrick Manieri to talk about his ongoing series of work known as Arrested Movement.
Why do you think this project has captured the imagination of gay men around the world?
Because we’re all the same really, except we don’t all look alike. We usually just see what society deems to be the ‘perfect’ body types, flashed across TV and social media all the time.
This project encompasses a wide variety of men that are photographed equally and beautifully. I feel that the variety of men and body shapes being highlighted are recognisable to most men. We need to see diversity represented more in the media. That, and also the idea of male body positivity is refreshing in a world where the media seems to only push female body positivity. In this day and age, where depression and anxiety are extremely commonplace, it’s nice to know that we’re not alone in the struggle.
Why are men so keen to be photographed by you for this project?
Because we all want to fit in. We all want to be accepted, and here is a photographic series celebrating all men, all body types, and showcasing them artistically. I think men look at this and can relate and identify with some of the participating models, because they see themselves in the photos.
Most of the men you’ve photographed for this project appear to be first-time models, most likely being professionally photographed naked for the first time. Was that experience confronting for many of your models?
From what I’ve seen, and from what some of my assistants mentioned to me, for most of the men that participate there’s a definite shift in their overall energy levels from when they first arrive at the studio to when they’re done. One assistant asked me — “What is going on in the studio? Because when they arrive they’re quite scared, some even shake with nerves, but when they leave they glow and have this sense of empowerment.”
I make sure that the studio is private and a safe space for them to try and feel as comfortable as possible. I brief them, and coach them with suggestions of possible body movement. I also stop periodically to show the gentlemen their progression so far in the shoot.
Most men, after seeing themselves on the screen during the shoot, are delightfully impressed by how they look. They look at themselves in a positive light artistically, and not what they usually expect to see. I talk to them about how their hands are positioned, their facial expressions, pointing of their feet, and the overall lines of their bodies in the frame.
When you’re not quite happy with your body, putting yourself out there is brave. I watch some men almost lose themselves in the moment and in the music. I’m grateful that I get to witness such a personal moment of self-evolution. For others, they’re determined to take an amazing photo, so they push themselves so that their final image is strong and unique.
Should everyone tackle a naked photo shoot at some point in their lives?
I don’t know if that’s the answer. What people should do is take time to appreciate and accept themselves, to put themselves first. Fill their own cups before extinguishing their energy with others. Uniqueness is special. It’s okay to look different on the outside, because we’re all the same on the inside.
How is the project continuing to evolve?
I’m currently working on the design of the book — I’ll be releasing a Kickstarter page this Fall. I’m also looking at gallery spaces to have the first of many shows.
Are you still actively shooting guys for this project?
I’m still actively photographing men. If it were up to me, I’d be in a different city every weekend photographing.
Since I’m funding this myself, I need to take breaks between cities. Travelling, studio costs, and hotels add up quickly. There are a few cities in the US, Canada, and Mexico that I’d like to do before heading back to Europe. Beyond that, there’s talk of Australia, and possibly some cities in South America for 2019.
How can we help each other feel better about our bodies?
I think we really need to be kind to ourselves, and each other — daily. Judgement and self-judgement is such a human flaw, it’s like a vibrational plague. We should be detaching ourselves from our smart-phones and social media regularly. Yoga and meditation are great ways to feel centred and grounded, to be in tune with our higher self. Eating right always makes for a happier body and mind. We need to encourage and validate each other to be the best we can be.
What do the images that you’ve captured through this project tell us about gay men and their relationship with their bodies?
Gay culture is meant to be inclusive, and we celebrate that inclusiveness. Though within the gay community, there’s such a divide between men. We’re labelled and put in categories, therefore creating almost a hierarchy of what’s acceptable.
Body-image and self-esteem start in your own mind, not on Instagram. We need to literally stop comparing ourselves to strangers on the internet. We need to make mental health a priority in the gay community.
I hope that when people see this project, they know their worth, they know that they’re beautiful, and that it’s okay to be different.
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