Wayne's story

What prompted you to go and see your GP?

"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.

"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, nothing for me to worry about.

"So of course, you trust your doctor. 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. The doctor saw the result and, as I had no other symptoms, he said it was nothing to worry about."

How long were you experiencing issues with urinating? 

"It was from when it started in 2008, right up until I had my prostatectomy. For that entire 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. 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.

"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. I kept being told I was a fit young man and everything was fine."

Did your family history raise concerns?

"Then in 2019, my brother was diagnosed with advanced prostate cancer. He was at stage 4.

"I remember going to my doctor's and saying ‘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. 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 happy as my brother had just been diagnosed with stage 4 prostate cancer.

"I was told I know your brother's got it, it doesn't mean you'll have it

"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. I started looking into it, 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."

How did the GP respond?

"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."

How did you push for testing?

"I called the doctor and again he said it's probably just a urine infection. Again, nothing to worry about. I then said, I really am concerned now, I've mentioned to all of you before my family history of prostate cancer.

"He said to me, to be honest, I can only book an appointment for you and he listed…If you've got three or four of these, I can only really see you if you've got these symptoms. And I said to him, yes, I said, I've got all of those simply because I was desperate to get a meeting.

"So at that point, he then booked me in to see my doctor. When I went to see her, again, she said I know you've got the 'stop start' symptom. She did a urine test but that didn't show an infection and she said, oh, well, your PSA is still below 3 and I know that they'd be reluctant to do an MRI until it reaches that.

"I said but my family history, I said my brother is stage 4. He's only literally got weeks to live, I said I'm really, really concerned and so she said ok, well, we'll put you forward on the basis of your family history."

How did you get your diagnosis?

"So went for an MRI and they came back very quickly and said we've seen something there that we need to have a look at so we need you to go for a biopsy. So I remember in March going for a biopsy, sat down with a consultant and my wife for the result...I'm afraid it is prostate cancer.

"I remember when I went for my biopsy, the nurse at the hospital said “Oh, why are you here ?” I said well, “a biopsy for prostate cancer” and she said, “oh…but you're 53, 54."

“I'm sure you'll be absolutely fine”. "I said, Well, I don't know.”

"And she said “your PSA, it hasn't quite hit 3 yet either”.

"So, for me, these doctors have in their minds, certainly the White doctors probably viewed it as an old White man's disease, having a middle-aged Black man coming in presenting, I believe, with symptoms, it probably didn't compute to them actually.

"Having said that, the treatment I got there was excellent, first-class treatment."

What treatment did you receive?

"I went on to have a prostatectomy and I remember my consultant saying, where the cancer was located, a DRE would not have found it because a DRE looks at one side, the lower side of the prostate, whereas my cancer was on the top side of the prostate.

"So it really was the MRI which gave them the information they needed. And when he got the test back on the prostate, he said the Gleason score was 10, so not only was it on the top side of my prostate, it was the most aggressive form of prostate cancer.

"So I had the prostatectomy and thankfully, I had radiotherapy a year later as well because they noticed a slight spike in my PSA. Ever since, it's been undetectable. I was on hormone treatment as well for two years, I came off that a year ago. Thankfully all the hot sweats and the weight is now getting back down to normal."

What message would you like Healthcare Professionals and GPs to take away from your experience?

"Never assume.

"Never assume, just because someone sits in front of you, they may not be presenting with all the symptoms and simply because they don't fit that profile, they're not 70, they may be 45 and they may have just one of the symptoms or they may just feel unwell. Never, never assume.

"Refer them on. Don't allow them to walk away from that meeting feeling as if they haven't been heard.

"They can change it, they can change the outcome for a lot of Black men if they were simply not to assume and categorise and put everyone into the same box. If I sit in front of you, I've got a strong family history of prostate cancer, I've got maybe one out of three or four symptoms that's enough. I've got to know that, once you start presenting with symptoms, that's a real issue.

"…and also, I would like them to perhaps be more proactive. A Black man comes in, maybe something completely unrelated, I would make sure it's on the top of your list. Get them to have a PSA test or get them checked in some way, shape or form."

Wayne was diagnosed with late stage prostate cancer (Stage 3) and has been doing very well after treatment. 

Read more about Black men and prostate cancer