That is the same today, more or less, as it was four years ago when I helped set up the Walnut group - also known as LGBT-Walnut - a support group for those with a prostate cancer diagnosis who identify as gay, bisexual, or as a trans woman. They come to us to hear how others deal with the physical, intellectual and emotional effects of prostate cancer and treatment on their ability to express their sexuality as a gay man, or how to manage the focus on something so male when they identify as a woman. We talk freely about the lived impact on one's sense of self-image and sense of belonging, and the effect of prostate cancer on sexual relations and roles.
Our group helps where there is a lack of dialogue with clinicians about the effects of prostate cancer on gay and bisexual men, or trans women. We need more dialogue with those treating us. It would be interesting if a hospital invited our group in to talk things through and get a better understanding of our position as gay guys with prostate cancer – to join up clinical and non-clinical cancer support. If clinicians don't ask us the right questions because they don't take into account people's sexual status and preferences, those coming to groups like ours will only get half the answers they need from clinicians.
I speak from experience seeking out others with my experience. I’m a gay man with prostate cancer, diagnosed seven years ago and now on 'active surveillance'. It was a couple of years into my cancer journey that I joined a Yahoo.com group for gay and bisexual men who have prostate cancer, but most members were people from America, Australia and Canada – there were just a few British men. It was there that I noticed someone setting up a group in Manchester. I went to its first meeting in April 2013 and though there were only five or six of us there, the experience of talking with other people who had the same background was incredible for me; I wondered why didn't we have something like it in the south of England. Much later, after a bit of digging around online, I found out there had been a group like this in the late 1990s, but no longer, so I helped found Walnut.
Most of those attending our support group are men in their 50s and 60s, sometimes older. About 10-15 percent of our attendees are partners to someone with prostate cancer. We see people before, during and beyond their cancer treatment. It can be difficult to have a frank discussion between partners when they are fully aware of the effect prostate cancer and its treatment might have on their relationship. Some men in the group identify as gay but were married and have children. Many of them have come to a point in their lives where they are exploring more openly their sexuality; consequently, their relationship with their married partner has come to an end. So it's like being a teenager exploring your sexuality for the first time, but, prostate cancer being a disease of this age group, they have had the diagnosis at the same time. It can put limits on their sexual functioning at the worst time, which can be an emotional roller-coaster.