Talking About It: to Share or Not Share My Prostate Cancer Diagnosis?

When I was diagnosed with incurable prostate cancer in May 2017, my treatment pathway was going to be hormone therapy and Docetaxel chemotherapy. It didn’t worry me at all, because it felt like we were taking steps to kick my cancer down the road and keep me alive as long as possible.

What I was concerned about, though, was losing my hair and having to explain what was going on every time I saw someone who knew me (and I know a lot of people). I therefore took a decision to be open about my cancer from the outset, so that I didn’t have to keep constantly telling my story every time I met someone.

Telling my story could help save others

Interestingly, this proved beneficial, as I have friends in the running community from all over the world. It was as a result of those friendships that I found out about Abiraterone and managed to get it prescribed. I had so many messages from friends asking me if I’d heard about it.

The benefit to me was two-fold. Firstly, I avoided chemo and hair loss and, secondly, Abiraterone has worked really well for me keeping my cancer very stable for 7 years to date.

Having been open about my diagnosis, it quickly became apparent that telling my story could help save the lives of other men by getting them to get tested. So I used social media to spread my story far and wide. I also became an awareness speaker for Prostate Cancer UK, for whom I did 50 awareness talks in 2023. They reached some 17,000 people, because one of them was recorded for distribution to 15,000 male employees of a large UK employer.

Making sure men know their risk

Talking about prostate cancer and making sure that men know their risk seems to be the best way of saving men’s lives until we get a better screening program.

One person told me that, after reading my posts, they asked for testing despite showing zero symptoms, and it led to a prostate cancer diagnosis. When you get a message like that, it gives me mixed emotions. Sorrow that another man is in the club, but joy that it’s been caught early.

This isn’t an isolated incident either. A friend was diagnosed with a PSA of 4.7 and phoned to thank me for saving his life. Of course I hadn’t saved his life at all; he had, by doing something proactive about his prostate health.

Not everyone wants to be open about a diagnosis

Having said everything above, it is important to respect the fact that not everyone wants to be open about their diagnosis. Some people may only share it with certain loved ones, rather than their whole family. I find this a difficult one because of the hereditary risk, but ultimately a person may not be able to cope with everyone constantly asking him about it.

Clearly, what’s right for me isn’t right for others, and I respect that position. But I’m glad that I’ve been able to talk about my illness for the benefit of others.