Personal experience: How I cope with my diagnosis

PATIENT & CARER STORIES

Personal experience: How I cope with my diagnosis

Published September 2021

This is an adapted first-person account of a real patient story, representing the challenges of living with an advanced prostate cancer diagnosis.

I feel quite emotional about the period before I was diagnosed – it was a really difficult time. I had started to feel ill – I had incontinence issues and went to the GP, who was concerned enough to ask me to keep a symptom diary. The issues just got worse and worse and a few months later I developed extreme lymphoedema. This led to a lymph node biopsy a few months later, as my healthcare team suspected lymphoma. The lymph node biopsy instead showed that I had late-stage prostate cancer.

I was actually relieved when the diagnosis was confirmed because it was an explanation for why I had been so ill. But it was still bad news – they said the worst is going to happen, your cancer has spread to your lymph nodes, your bones, spine and skull.

It was awful. I can’t say any more than that.

On the day of diagnosis, I was prescribed a treatment that helped me to start feeling better pretty quickly. In fact, after several treatment changes, within a few months I actually started to feel quite well.

I am currently on a combination of treatments. I get daily side effects and my concentration is also affected – it’s hard to explain, it’s a sort of fogginess. Some people call it ‘chemo brain’.

I do think the treatment also makes me more emotional. I noticed this when I was put on my first hormone treatment, especially in the first 5 weeks. The other issue is anxiety associated with scans. Some people call it ‘scanxiety’ – because you are always waiting for the results of scans or PSA readings and it’s hard to get away from the anxiety around those milestones.

I find it hard to talk about these things with my immediate family, so I use social media quite a lot for support. I tend to use it to talk to other people with stage 4 cancer. I’ve made some friends that way, so we chat privately or talk on the phone and that really helps. I do see my GP, which is kind of like another level of support. My GP doesn’t know as much about prostate cancer as my oncologist, but he’s still a friendly face and that helps. There are really kind nurses at some of the charities who provide support and I see them. I don’t have a clinical nurse specialist at the hospital I am being treated at, but I imagine others would find them quite helpful as a go-between the oncologist and other services.

Some of the side effects no one really knows how to help you with, though. The healthcare professionals can give you examples of what has worked for others, but it might not always work for you.

I would always say that someone else in my position should try to find something that gives them purpose. Since being diagnosed, I have volunteered at patient groups for people with advanced prostate cancer; this makes me feel like I have a new purpose in life. I talk to other people who are going through the same sort of thing: men with prostate cancer, women who are caregivers, and friends and family who are supporting someone with prostate cancer. I get a lot of enjoyment from this and I suppose my prostate cancer diagnosis, although a terrible negative, has also enabled me to be more positive in other ways. I’ve started to go out more, I enjoy nature more and life in general.

Explore more articles...

ABOUT PROSTATE CANCER

Understanding advanced prostate cancer

A guide on advanced prostate cancer and an overview of available treatment options.

PATIENT & CARER STORIES