Creating connections: celebrating 25 Years of our Online Community

This year marks an incredible milestone for our Online Community, which turned 25 years old in July!

Since launching in 2001, it’s grown into a vital part of how we support people whose lives have been affected by prostate cancer – a space where thousands of people come together to find information, ask questions and share experiences.

The Online Community is a safe and supportive forum, available day and night, where you can connect with others who truly understand what you're going through. Whether you’re worried about symptoms, have just been diagnosed, are exploring your options, or navigating life after treatment, the community offers reassurance, practical insights and a sense of belonging.

As we celebrate 25 years, it’s a moment to recognise not just the longevity of the platform, but the people who’ve shaped it – the members who share their stories, support one another and make the space everything it is today.

We spoke to some of our members about being part of the community and what it has meant to them. They generously shared their thoughts, experiences and reflections, and we’re delighted to share a selection of their words below.

What brought you to the Online Community?

I was diagnosed with prostate cancer in 2016 and had a prostatectomy in early 2017. Following the operation, I was researching all sorts of things related to the side effects of the treatment and the chance of recurrence and I stumbled upon Prostate Cancer UK and the Online Community.

For a few months, I just read some posts that were relevant to my condition and circumstances. Then, in January 2018, I started my own thread.

I had a few of the side effects and, when I posted on the forum, many other members responded with advice, sharing how they dealt with the same problems. Others gave words of support and encouragement.

There are men or their partners in discussions at every stage of the disease, from pre-diagnosis to end-of-life care. It’s a place where you can speak openly about all sorts of issues, like erectile dysfunction and sexual relationships, bowel and bladder issues and end-of-life care. The community has been a tremendous help and support to me over the past nine years.

- Bill, Online Community member

I was diagnosed with prostate cancer in May 2015 and had a prostatectomy in July 2015. In September 2016, my test showed the cancer had returned. I was unbelievably scared, and being of scientific qualifications, I started researching my situation.

I joined the Prostate Cancer UK Online Community and immediately connected with the experienced survivors and partners. I couldn’t have survived or coped without them.

I could vent, talk and ask for advice without judgement. I made many close connections due to our shared experiences. The community was there for me – and I for them – throughout and beyond.

- Ido4, Online Community member

I stumbled across the Online Community while searching for information shortly after my late husband was diagnosed with advanced prostate cancer. It became a lifeline for me as Mike’s diagnosis was serious and much of the information I found elsewhere really wasn’t relevant.

Reading carefully and asking questions of some of the experienced members on the forum was so helpful and reassuring. That I could post at all hours, especially in the early hours when I couldn’t sleep, was so helpful. Before long, some of us were referring to ourselves as ‘the wide-awake club’ - there was always someone worried and struggling to sleep, and it became a safe and comforting space.

After losing my husband, I continued to read the posts and jumped in where I felt I could help. Many people still messaged me to ask how I was coping, which was helpful. Eventually I started to go on the meet-ups that members arranged in London and Leicester, where I met people who went on to become good friends. It’s amazing to realise the only thing we really had in common on the forum was a prostate cancer diagnosis, but the forum became a lifeline.

- Janet, Online Community member

What does the Online Community mean to you?

When your partner first gets a diagnosis of prostate cancer, your mind goes into overdrive – thinking the worst, not understanding enough and really needing to talk to other people in the same situation. On top of that, my husband didn’t want to tell anyone, even our grown-up daughters.

I found the Prostate Cancer UK Online Community by searching online, and my husband agreed I could join it as long as we remained anonymous. I also felt I wanted to share my experiences with others, so they could see things from a different perspective. And, more importantly, to get input from others on decisions we were having to make.

One great benefit of this was when I could tell our daughters a year later. Just before my husband started radiotherapy treatment, I shared a link to one of my posts and they could see all the detail and responses to my queries. This really helped them to understand things in more depth.

I feel very supported by members of the Online Community. I know they’re there for me when I’m stressed, worried and needing to reach out. That makes me even more keen to be able to offer the same support to others.

- Schubert, Online Community member

Although every person’s journey is different, we got reality, not the rhetoric, from the Online Community. Real people who’d been through it – and not just the outcomes from statistics and studies.

For many of us, the journey is a long one – from tests to diagnosis, through to treatment and side effects (and treatment for those). And not least, all the frustration and mental anguish that accompanies going through all of this, and the effect it can have on your relationships. We’re so grateful that the community is so open and willing to offer shared experiences, advice and support, and we hope we can – in some small way – offer the same in return.

- Debbie, Online Community member

The Online Community has been very important to me, especially in the early stages, when going through the diagnosis and then receiving treatment. Having been diagnosed at a young age, I didn’t have any friends that had been through the process – but the forum gave me that opportunity to connect with people who’ve had a similar experience.

I could obtain valuable information on what to expect and how best to prepare for each stage – from diagnosis to recovery from surgery, and then ongoing monitoring after surgery.

The forum made me realise that I wasn’t alone and that many other men were going through this process. It helped me to mentally cope with the situation that I was faced with.

- JP77, Online Community member

Looking to the future

As we celebrate 25 years of connection, support and shared experience, we’re also focusing on how we can make the forum even better for everyone who relies on it.

We’ve been gathering feedback through workshops, interviews and surveys, to better understand what you need and how we can support you. Using this feedback, we’re now developing the Online Community forum to provide the best support and connection for those we’re here for.

Want to join the conversation?

Check out the conversations, support and sense of community that have made the Online Community such a valued part of Prostate Cancer UK's support offer for the past 25 years.

Here's to the next chapter!