“We all share laughs to help bring normality”: the virtual support group for men on active surveillance.
Our active surveillance online virtual support group is a casual and convenient way to help men make sense of their situation, with the opportunity to help others and have plenty of laughs along the way.
After being diagnosed with slow-growing localised prostate cancer, Colin Jones, 66, was placed on active surveillance to monitor his disease progression. Here he talks about how our active surveillance online support group helps him make sense of his situation, with the opportunity to help other men and have plenty of laughs along the way.
Colin was at an appointment with his GP about an issue unrelated to prostate cancer when the doctor asked him if there was anything else he’d like to discuss. He said that he’d been needing to urinate more frequently and urgently and was getting disturbed in the night. This was something he’d been experiencing for over ten years. Colin's father, also a GP, had told him it was just part of getting older and generally speaking, nothing to worry about.
Colin's GP decided to examine him, and gave him a PSA (Prostate Specific Antigen) blood test which showed his PSA levels were higher than average. After an MRI scan and a digital rectal examination, Colin was diagnosed with prostate cancer.
"The whole situation felt surreal. I couldn't absorb any information. I felt annoyed at myself for not speaking to someone about my symptoms sooner. My friends had also noticed that I appeared to have a problem when we were out, and had been badgering me to get myself to the doctor, but I didn't listen to them.”
Colin was told he was in a good position to have treatment straight away, but he was worried about the side-effects. His cancer was at a stage where he could stay on active surveillance, so he opted for that, with six monthly check-ups.
"I’ve been on active surveillance for two-and-a-half years and although my sexual function has been affected slightly, it’s easily corrected with medication. I’m happy with my decision and haven't experienced any other side effects."
But another recent biopsy showed his Gleason score (a grading system that is used to determine the aggressiveness of prostate cancer) had increased. His PSA levels had also risen, and he was advised that he may need surgery or radiotherapy.
He said: "I’m disappointed that I might have to have treatment. But I can't pretend nothing is happening.
“I do feel quite grateful that for two and a half years I didn’t need treatment. I’ll try and stay on active surveillance for as long as possible."
"There’s a fair exchange, which is reassuring. Talking helps me to understand information better. I appreciate the level of comfort the group has given me."
He’s also grateful for the support of others around him, especially those who’ve been through similar experiences.
"I feel that going through prostate cancer has changed my outlook. It helped me to feel even more positive about life. I strive to make every day better."
"I also feel very grateful for my hobbies, particularly target shooting. A few of my colleagues at the club have also been affected by prostate cancer and we share our experiences and support each other, which is great."
"I am grateful to Prostate Cancer UK for providing the virtual support group. You’re able to talk to other men in a similar position and find out information that you didn’t know before. I’m also able to impart my own knowledge to others."
"There’s a fair exchange, which is reassuring. Talking helps me to understand information better. I appreciate the level of comfort the group has given me. We all share laughs and joke with each other, which helps bring some normality to the situation.”
“I would encourage anyone that is on active surveillance and seeking support to join the group and share your experience. There is nothing to be nervous about. It’s a small number of men and it’s very informal.”