Justin's active surveillance story

In 2024, at the age of 52, Justin was diagnosed with localised prostate cancer. Here, he talks through his decision to go on active surveillance, a way of monitoring localised prostate cancer.

My diagnosis

When my dad was diagnosed with prostate cancer, it really made me stop and think about my own risk. About a week later I asked my GP for a PSA blood test. They hesitated at first but agreed in the end, so I went ahead with the test.

When they told me I had a raised PSA level, I went straight to Doctor Google to try to understand what that meant for me. But I was quickly overwhelmed by all the different information, so I decided to let my doctor guide me.

I had an MRI scan and biopsy and my doctor confirmed that I had localised prostate cancer with a Gleason score of 6 (3+3). I didn't know what Gleason 6 meant at all. I didn't really know what any of the results meant. I asked him whether we had caught it early enough. He explained that it was low grade cancer at a very early stage, which meant it would grow very slowly. He didn’t seem concerned and that really reassured me.

My treatment options

At first, my doctor only talked me through two options, surgery or radiotherapy. They didn’t mention active surveillance. Looking back, I think I was trying to get him to tell me what he would do in my situation. But that’s not what they do. They just give you the options. And I realised quite quickly that there wasn’t one answer that would fit everybody.

I spoke to the surgeon who said it would be easy to remove the cancer. But I thought the potential side effects sounded awful. I tend to struggle with low mood at certain times of year like when it’s dark during winter. I was worried that having side effects like urinary incontinence and problems having sex might make that worse.

Choosing active surveillance

I told the surgeon that I couldn’t decide what treatment to have yet. It just felt like too much information and I needed more time. That’s when he suggested going on active surveillance, which I had never heard of. He explained that, since my cancer was localised and had a low risk of spreading, it could be monitored with regular tests.

I was immediately drawn to active surveillance. It felt like hope was starting to shine a little brighter. It would give me more time to understand all the information, and it didn’t have any side effects.

Choosing to go on active surveillance was a huge weight lifted from my shoulders, not just because I didn’t have to have surgery or deal with any side effects, but because I didn't have to make the decision there and then.

When I first told my partner about going on active surveillance, she said, “You’re just going to do nothing?!” and I understand why she felt that. You might think about active surveillance as doing nothing. And it can be really scary to feel like you’re doing nothing when you know you have cancer.

But I see it as a positive decision because my cancer is being monitored. I know that if my cancer starts to grow then I might still need treatment. But I want to wait until there’s no other option.

Life on active surveillance

My PSA blood tests aren’t too inconvenient. My hospital is 30 miles away, so I take a few hours off to travel every three months.

I’m conscious of the test date in my calendar in the same way as I am about a dentist appointment – I’m not too fond of those either! And my anxiety does go through the roof, when the phone call comes in.

Most days, I don’t really think about having prostate cancer or being on active surveillance. It sometimes comes to mind if I notice a change, like feeling a bit distant during sex or having a lower sex drive. My first thought can be that it’s because of the cancer, but I know it can just be part of getting older. When I stop and think about it, I realise I might be overthinking, and the feeling usually passes.

My prostate cancer has no visual signs, and my humour has stayed the same. I think that’s kept everyone around me calm. And that keeps me calm too. I struggle when the people around me are anxious because I have to calm them down to create the calm that I need.

What active surveillance has really given me is the time to feel. I go for a walk during my dinner break to a very pretty park near us. Instead of just walking around the park, I switch positions on different park benches to think about different things.

Having that time to myself helps me to think things through in a step-by-step way. I might read other people’s experiences or headlines that make me feel nervous. But I know that I don't have to make decisions quickly right now. I can learn in a slow way that feels safe to me.

I can talk to people about it and read about it and then come back to the park bench. And in-between thinking about it I feed the pigeons and look at the squirrels. And the rest of the time, I’ve found that I’m even more aware of all the possibilities that life has to offer. I’m living in the present.

Story added: April 2026