Tony T's story

Tony was diagnosed with localised prostate cancer in August 2015 at the age of 60. Three months later he had surgery to remove his prostate (radical prostatectomy). Here he talks about his experience, what it was like being a gay man with prostate cancer, and the support that helped him.

Being diagnosed

In 2015 my twin sister was diagnosed with breast cancer. I had no health concerns or symptoms myself but it was my sister’s diagnosis that motivated me to have a health check.

I had a rectal examination (DRE) and a PSA test – the results of both showed there was a problem. I then had a biopsy, which was an awkward experience but not as bad as I had imagined. I found that my fear was worse than the actual procedure. The worst thing was to see blood in my urine and semen afterwards, but this improved over time. A week later I was diagnosed with localised prostate cancer.

I found that my fear was worse than the actual procedure.

Having surgery

Straight away I was advised to have a radical prostatectomy. Although I wanted the cancer removed so I could carry on with my life, I decided to read some information and get a second opinion.

After talking to other doctors, it seemed that surgery was the best option for me. A few months later in November 2015 I had my surgery at The Princess Grace Hospital in London.

My main concerns with having surgery were being incontinent and losing my sexual function afterwards. I started doing exercises to strengthen my pelvic floor muscles as soon as I knew that surgery was on the cards. I think this made a huge difference as I stayed fully continent as soon as my catheter was removed after surgery. This was a very pleasant outcome.

I stayed in hospital for one night and was well enough to go home the next day. I felt good in myself and positive at how things had gone. I returned to work gradually after three weeks – I have my own business so it was important to get that sense of normality back in my life.

My experience of talking to health professionals about my sexuality

I’m always open and happy to talk about my sexuality. I was accompanied to most of my medical appointments by a good friend, and this was never questioned and I never felt judged by any of the doctors or nurses. I only ever experienced complete professionalism.

But what I did find was that many health professionals didn’t like talking about sex. Although I felt that my doctor had empathy for me as a gay man, I still felt awkward talking to a heterosexual consultant about my sex life.

For men that are guarded about their sexuality or nervous to tell their doctor or nurse I would say that it doesn’t matter, we’re all men and life is more important. Don’t be embarrassed to ask questions that are important to you.

Life after surgery

Although I stayed continent after my catheter was removed, I did lose my sexual function. A year after surgery I was referred to an erectile dysfunction clinic. I tried the drug Cialis® (tadalafil) but it didn’t really work for me. I then tried injections – they’re not perfect either but they’re OK and do the job.

But it does mean that I’ve lost that sense of spontaneity and some of my confidence when it comes to starting new relationships. I now think about sex in a completely different way than I did before the operation – I try to approach relationships from a friendship point of view first. I’m more sensual and in many ways I find that more relaxing.

Attending a prostate cancer support group, specifically for gay and bisexual men, has helped me get some of my confidence back. I would feel uncomfortable attending a general prostate cancer support group in my local area. I would never discuss my sexual likings in front of a group of heterosexual people, mainly because it’s an age thing and I think there’d be a bit of a reaction. The group I attend is relaxed, friendly and we can talk about anything. But we don’t just talk about sex, it’s more about being with people who have a shared understanding. It’s nice to know I’m not on my own in this journey.   

I also found Prostate Cancer UK information and the Specialist Nurses really helpful. I downloaded some of the fact sheets so I could look at them easily and quickly if I wasn’t sure about something. There’s also a booklet just for gay and bisexual men which is great. I now do what I can to raise awareness and fundraise for Prostate Cancer UK. I often wear a pin badge or wristband to help start conversations.

I now think about sex in a completely different way than I did before the operation – I try to approach relationships from a friendship point of view first.