Theoretically, the diagnosis and treatment of prostate cancer are the same for everyone born with a prostate. However, the experience of prostate cancer can be quite different for people who are LGBTIQA+. John, 69, a gay man from inner-city Melbourne, was diagnosed with aggressive prostate cancer in July 2022. He shares his experience with the disease and what he wants every person with a prostate, regardless of their sexuality, to know.
I thought I knew all there was to know about prostate cancer — my father died of the disease. I was with him through his illness, taking him to his appointments, and I was with him when he died, much too young, at 68. Because of my family history, I’d have regular PSA tests done. The last routine screening was just before COVID-19 and it showed I had an elevated PSA. Then we went into lockdown, and everything went to telehealth. I was living in regional New South Wales with my partner and when the borders shut it all became very complicated.
I went back to the doctor at the start of the year when I had some bladder and bowel issues. Just very vague “symptoms” He did another PSA test and he sent me for ultrasounds, CAT scans and an MRI. They found growths on my kidneys, which I was more worried about, but turned out to be benign. He said my PSA had increased a lot and informed me that I had a very large prostate. He referred me to three urologists and said I needed to take the first one who responds. I got an appointment with one within a week and was quickly booked in for a biopsy after the specialist did a digital rectal examination. I recall his words to me so clearly, “John, your prostate is so large I can’t even get my finger around part of it”. The surgeon called me the day after the procedure and he said, “I'm afraid it's bad news. You've got a very aggressive form of cancer.” It’s 9 out of 10 on the Gleeson Score. If there's something worse than saying you've been told you've got cancer, it's putting the adjective aggressive in front of the word cancer.
I was knocked for six. I was in a state of shock, I still am really. I said, "Well, surgery then?" And the surgeon said if it's spread to other organs, surgery wouldn't be on the table, it'd be radiation therapy, hormone therapy or chemotherapy. I was sent for a PET scan to see what the state of play was.
I was expecting the worst, of course. The results came back that it wasn’t in other organs. So surgery was now an option. He said, “it needs to come out” and I desperately wanted the cancer out of me, so I had a radical prostatectomy. My urologist talked me through all the side effects very thoroughly. I remember saying to friends, "I can live with incontinence and I can live with impotence as long as I can live."
I was operated on a couple of weeks later. He said my prostate, which should be the size of a walnut, was the size of an orange. He also advised me that it had been found in the rectal fat, the seminal vesicles and my pelvic lymph node which were all removed in the lengthy and complicated surgery. The side effects of the surgery were quite confronting. I was so bloated. My face was twice the size of what it really is. I kept saying to the nurses, "The person you're looking at is somebody I don't recognise.”
I developed a bladder infection that was difficult to treat, and we were waiting for that to clear up before starting chemotherapy. In the meantime, I had done some tests before seeing my specialist. When I went in to see him with my partner, I was expecting to go into chemo straight away, but the surgeon said my results were bewilderingly good. Zero PSA and zero markers in my blood, so, I’m being monitored to see how it goes. I'm very happy with that joyful news, but I still feel as if I'm living in the shadow of something.
It's been three months since the surgery and I’m dealing with incontinence, impotence and loss of penis length. There's a lot to deal with on a physical level and an emotional level.
Seeing the urology physiotherapist, I felt the need to say, "What you see down there now is not the way it was pre-surgery." Because they're saying, "That's okay." I said, "Yeah, it's okay to say it's okay," but it impacts me. I'm dealing with this very different look and impotence and as a gay man, I think all men, if they have sexual dysfunction or erectile dysfunction, that impacts upon them and their relationships. I was quite depressed in the aftermath of the diagnosis. Antidepressants have a role to play in my recovery. I'm also seeing a counsellor. I'm on a mental health plan. I think those things are important and go hand in hand with physical recovery.
I've got a broad, supportive network of people around me and a very supportive workplace, I can’t stress how important that has been. I've also got very good clinicians. They don't bat an eyelid about my sexuality. The information provided was very general in nature, nothing specifically addressing the needs of gay men but the Prostate Pride Peer Support Group I joined was incredibly valuable for that. I was put onto it by my GP who has an emphasis on LGBTIQA+ health. We can talk frankly about our situation, our needs, our sexual lives, our partners, the impact on partners and issues like that. Sex is an important component of our lives. It doesn't necessarily end at 40 or 50. These personal things need to be part of the open discussion about living well with cancer or recovering from cancer.
Men aren't good about talking about their bits. They're not good about talking about their prostate. They're not good at talking about their health. I think gay men are probably more aware — and those at risk of HIV or living with HIV — they’re pretty good at having three-monthly check-ups. But even my friends who are gay and had “prostate problems” I wasn't even aware they had prostate cancer. They kept it all so quiet and private.
I want people to know my story. I want people to be aware of the risk, to have regular checkups, and to monitor their health.
I'm mentioning to people all the time, gay or straight, "Please get a regular PSA test."
I wouldn't wish prostate cancer upon anybody at all. I don't want to die. I've got a lot of living to do. I want to see what happens to my daughter, who's 23. I want to spend more time with my partner, I want to do things in life. There's always a trip to be had and music to be heard. I'm thankful I am alive and I sincerely hope it doesn't come back. However, if it does, I think I’m in a better place to deal with it on all levels, particularly the emotional level with all my support. We just need to help each other at every turn, to enhance the road to recovery.
Head to PCFA.org.au to find more resources for LGBTIQA+ people with prostate cancer and connect with peer support groups near you.
