Wayne's story
Wayne experienced challenges in getting a diagnosis of prostate cancer, despite going to see his GP on multiple occasions. Here, he tells his story.
Can you take me back to the time leading up to your first encounter with a healthcare professional or GP? What prompted you to go along to make your appointment to get tested?
"It started in around 2008, when I was 42 and living in Hampshire in the country. I noticed I had issues urinating. I was experiencing ‘stop start’ urinating – so delayed start, but then you start and then you stop. It came on quite gradually, but I thought it was strange.
"I went to see the doctor to tell them I had this problem. They didn't seem bothered at all, and put it down to maybe some infection or something. They told me there was nothing to worry about.
"So of course, you trust your doctor. And I didn't really know too much about prostate cancer back then. I'd known of someone who had prostate cancer and had it successfully treated, so there was an awareness there, but I didn't for a moment think I'd have to look into it.
"The ‘stop start’ urinating didn't get any better so I thought maybe there was something more going on. In about 2009, I had my first PSA blood test, which was about .8 I think. The doctor saw the result and, as I had no other symptoms, he said it was nothing to worry about at all.
"So, they were my very early encounters with GPs. They weren’t at all bothered by the fact that I was having challenges urinating."
How did that make you feel, them not being too bothered? Did that make you feel that you were being dismissed?
"No, at that point I perhaps didn’t feel so much dismissed, but they tried to reassure me that there was absolutely nothing to worry about.
"They looked at my age and said I was young, I had no other symptoms, and it just happens sometimes. Prostates sometimes become enlarged or could be a number of issues, but it's nothing to worry about.
"I don't even think I had a digital rectal examination (DRE) at that stage. I could be wrong, but I certainly know that, because the readings of my PSA test were so low, the doctor didn't seem unduly concerned. I wasn't unduly concerned then either. I thought everything else was fine, so I didn't push it at that point."
How long were you experiencing the issues with urinating? What sort of timeframe?
"For me, it was from when it started in 2008, right up until I had my prostatectomy. For that whole time, I was having stop start urination problems, and I continued to go back to my doctor.
"In 2015, I had another PSA test. My first PSA test in 2008 had been .8, and in 2015 it was 1, so it hadn't moved much. I was still having the stop start urination, so I made sure I got regular check-ups. My awareness of prostate cancer had increased because of my friend who’d had it, so I thought I’d better look into it a bit more. I realised that, as a Black man I was more likely to get prostate cancer than a White man.
"I started to make sure I got my PSA levels checked more regularly. I spoke to my brother made sure he got checked regularly too.
"It was later on, when the symptoms of stop start urination started to get slightly worse, that I became concerned. My PSA went from around 1 in 2016 to 1.9 in 2018. It was creeping up.
"I told my doctor I was concerned and they did a DRE. They said my prostate felt absolutely fine and not to worry about it as I had no other symptoms. They told me I was a fit young man and everything was fine.
"Then in 2019, my brother was diagnosed advanced with prostate cancer. He was at stage 4 when he was diagnosed. It had already spread.
"I remember going to my doctor's and saying ‘look, my brother's just been diagnosed and he's actually got stage 4 prostate cancer. I know that if you've got a family history, you're a Black man, that puts you right at the top in terms of risk factors. What do I need to do?’ They did a DRE, took my PSA and my PSA had crept up to 2.3.
"They seemed to have in their minds this magic figure of '3'. They told me they couldn't do anything until my PSA reached 3, then they'd investigate further. I told them I wasn't not happy as my brother had just been diagnosed with stage 4 prostate cancer.
"I then realised my dad actually had prostate cancer too. I found out a couple years before that he’d been diagnosed and was on watchful waiting. This became a concern and I started looking into it. I thought, well, my dad's got it, my uncle's died from it, at least two of my dad's brothers died from prostate cancer. My mum's brother had prostate cancer and died from it I think in 2019/2020. So it was endemic in my family.
"I went back to the doctors and said I was really concerned. This is the part where I felt I was being dismissed as being more or less paranoid.
"GPs and Health care professionals can change the outcome for a lot of Black men if they were simply not to assume and categorise and put everyone in the same box."
"I remember my brother had been to see a doctor and found that his PSA levels were through the roof – something like 4, 5 or 600. When I found out, I booked an appointment to see a doctor, and he told me he didn’t think I had anything to worry about. He said 'just because your brother's got it, it doesn't mean that you'll have it.'
"I said, ‘I get that, but I have concerns.'
"I told them that I’d had this stop start urination for quite some time, it's not getting any better. I told them that my dad had had prostate cancer, but they still didn't offer me an MRI or anything like that at all. They simply said they could do another PSA or maybe a DRE if I wanted one. I told them I’d had them, but the doctors weren’t telling me anything or taking any action whatsoever.
"So, at that point, I did feel dismissed."
