Why LGBT Support Groups Are Essential To People Living With Prostate Cancer

Prostate cancer is one of those taboo cancers - a cancer that lies in the area between a man's navel and his knees - an area where men fear to tread and don't talk about - unless it's about bragging. This is where I've found being a man gets in the way of being a man with prostate cancer when it comes down to discussing the side effects of having and living with prostate cancer.
kali9 via Getty Images

I've been living with prostate cancer for nearly ten years now. I was diagnosed with prostate cancer in December 2007 resulting in having a radical retro pubic prostatectomy in February 2008, then three months later having to have 5 weeks of radiotherapy coupled with 30 months of chemical castration.

I'm a 63-year-old gay guy on the autistic spectrum, I experience the world in a way that is different to many people; for me it means I ask questions others seem not to ask. I was born in 1954 into a working-class family.

Prostate cancer is one of those taboo cancers - a cancer that lies in the area between a man's navel and his knees - an area where men fear to tread and don't talk about - unless it's about bragging. This is where I've found being a man gets in the way of being a man with prostate cancer when it comes down to discussing the side effects of having and living with prostate cancer.

Back to my childhood (which sets the scene on my attitude to sex for many years). I found growing up traumatic, as anything involving sex, emotions and expressing feelings in my family was definitely taboo. I found my journey through puberty extremely painful, I was so fearful of exploring my sexuality, not just with others but with myself. I eventually 'came out' when I was 27-years-old, just as the HIV/AIDS epidemic was taking hold around the world.

I grew up in the 1950s and 60s when homosexual acts in private between two men was illegal and then partially decriminalised in 1967.

In the early 1980s I was about to buy my first property and to secure a mortgage I had to have life insurance. If I told my GP I was gay - society said I was too promiscuous and will die with AIDS so therefore no life insurance, no mortgage. And yes, back in the early 1980's if you had HIV you were most probably going to die with AIDS so securing life insurance if you were gay was almost impossible.

Later, Section/Clause 28 was enacted by the conservative government in 1988 (a local authority "shall not intentionally promote homosexuality or publish material with the intention of promoting homosexuality" or "promote the teaching in any maintained school of the acceptability of homosexuality as a pretended family relationship").

So you can see me being totally free with sharing my sexuality with health professionals has had its limitations.

However, in 1990 I discovered a personal growth workshop that over the next few years helped me grow out of what I could see was my dysfunctional learned behaviour about my sexuality and fear of expressing my emotions and the negative side of my autistic slant on the world.

My first boyfriend died with AIDS, my second boyfriend died with AIDS. I'm HIV negative. The personal growth workshops helped me deal with my losses and helped me express what was going on for me emotionally and intellectually.

Moving on to 2008. A few weeks after the surgical removal of my prostate, seminal vesicles and some lymph nodes I started to experiment with trying to masturbate (I was told I'd be able to have orgasms but no ejaculation). I managed an orgasm, I didn't rip my stitches and yes there was no ejaculate. I was thrilled, so I immediately texted my urology cancer nurse with the good news: "Lorraine - I've just had my first wank!" Her reply floored me: "Martin, that's great news but no one has ever sent me a text like that before". What floored me was that she was a urology prostate cancer nurse and no one had ever shared a story like that before! I thought if I had my leg amputated and had just run my first marathon and had texted that success there'd be a celebration; if I had throat cancer and had spoken my first artificial words similarly there'd be a celebration.

No! Because my cancer was somewhere in between my navel and my knees and involved things sexual this was a no-go area. Prostate, testicular, penile and bowel cancers are taboo cancers.

I saw all through my life I had a mantra talking to me in the back of my mind when something didn't feel right - "this isn't right." "This isn't right", about me feeling bad expressing how I feel, "this isn't right", about me feeling shame about being gay; "this isn't right", about health professionals not helping me with how I'm feeling now I've no testosterone (being chemically castrated), "this isn't right", about men not talking about how they feel about not being able to ejaculate, "this isn't right", how I don't know how it feels to be a man.

That's when, with the help of my urology nurses I started The East Lancashire Prostate Cancer Support Group.

However, after a couple of years I still felt my own very personal needs as a gay man weren't being met. It was almost as though I was part of a group where the men and their wives were talking about things, which I have no interest in and know nothing about. I was having to explain what it's like to be a gay man. I don't want to or need to have to explain myself and my lifestyle choices to other people. I wanted to be a part of a group that talked freely about my stuff that I am genuinely and emotionally interested in.

That's when I decided to help bring about a new support group: Out with Prostate Cancer. So with the resources of The LGBT Foundation, a gay radiologist, Macmillan and Prostate Cancer UK, the first UK support group for gay and bisexual men and transwomen, where anything is up for discussion, was born. We started in Manchester nearly 5 years ago - Manchester is a city that welcomes diversity. We now have groups in Birmingham and London.

I now feel that more and more of my needs are being met, however, this has only come about as a result of me getting out there and knocking on doors and what I call "pushing the envelope" asking what to others are embarrassing questions, demanding answers and resources and working cooperatively and closely with other organisations.

I am also glad to hear that Prostate Cancer UK has now set up an online support group for gay and bisexual men and MSM (men who have sex with men). I took part in the first session, which was a great success. Everyone who participated got involved with the conversation and were happy to share their experiences of prostate cancer. I understand, the importance of talking to other men and so I would encourage any gay, bisexual or MSM who need extra support or have any concerns about prostate cancer to sign up and share how they feel.

We still have a long way to go, but I feel that we are making steps in the right direction, and I want men who are similar to myself and have gone through what I have, to understand that there are resources out there for them.

•Prostate Cancer UK has partnered up with Opening Doors London to trial a monthly online support group for gay and bisexual and men who have sex with men, affected by prostate cancer. To join the next online support group on November 15th at 7pm, please register your details here: https://prostatecanceruk.org/lgbtgroup

•Anyone with concerns about prostate cancer may contact Prostate Cancer UK's Specialist Nurses in confidence on 0800 074 8383 or online via the Live Chat instant messaging service: prostatecanceruk.org. The Specialist Nurse phone service is free to landlines and open from 9am to 6pm Monday to Friday with late opening until 8pm on Wednesdays.

Close