Prostate cancer treatment and the kindness of strangers

Robert Sayer discovered he had prostate cancer in the middle of a relocation from the Midlands to Cornwall. He describes how a friend suggested he went to BPC and how Robert and his wife Yvonne received vital support from another couple they had not met before, but who had a shared experience of prostate cancer and wanted to help.

“I found out I had prostate cancer by chance. I had been getting up to go to the toilet two or three times each night, so I asked my GP for a general check-up. I took a number of tests and and my PSA was slightly raised, so my doctor also did a physical examination of my prostate, but he said it was nothing to worry about. The main problem the check-up identified was my cholesterol, which was high.

I was 61 at the time and went away promising to ‘be a good boy’ and lower my cholesterol. I had no great concern about prostate cancer. I was advised to come back in three months and at that point, my PSA had gone up again, to between 4 and 5. The advice was to return in another three months, by which point my PSA was between 5 and 6.

At that stage, my GP sent me to hospital for a scan and biopsy, which I found extremely painful and unpleasant. The results were ambiguous – anomalous cells were found, which meant they were not normal but neither had they fully developed into cancerous cells either.

I returned to the pattern of repeated PSA checks. When my level went up again, reaching 8, I saw a nurse who asked me – would I like to have another biopsy? Given the choice and remembering how unpleasant the biopsy had been, I declined. Looking back now, I could have done with a bit more guidance at that point.

For three months, my PSA remained stable but by the next test, it shot up to over 11. This time I was advised to have a biopsy and also, before that, an MRI scan. This confirmed that I had prostate cancer, with a Gleason score of 3/4.

It could not have happened at a worse time. My wife and I were due to move from the Midlands to a new home in Cornwall in two weeks’ time. I saw a urologist at my local hospital who said I could have radiotherapy or surgery but suggested I took some time to think about it and did the house move first.

A friend of mine, Martin, had been looking after my car. I went to see him, told him I had decided to sell the car and found myself telling him all about my prostate cancer. Apart from my wife, I hadn’t spoken to anyone about it; I think because I hadn’t got my own head around it.

My friend Martin was very clear: he said go to the Birmingham Prostate Clinic and see Alan Doherty; Mr Doherty had operated on his friend, John, three months earlier.

I saw Mr Doherty within a few days and he was a breath of fresh air. He was the first person to say clearly: this is where I’m coming from and this is the advice I would give you. It was just what I needed. He explained because my PSA was above 11, as well as removing the prostate, he would take out some lymph nodes. He also explained how he had come full circle, having been a leading keyhole surgeon, he had returned to open surgery because it enables him to have better feel and an open field for precise removal of lymph nodes and sparing the nerves. I’m an engineer and that made a lot of sense to me.

I had my operation at the beginning of October, four days after moving to our new house in Cornwall. While I was in hospital in Solihull, my wife stayed nearby with John and his wife, Rose. It was an incredible act of kindness – we had only just spoken to each other. We didn’t know each other, but shared the experience of facing prostate cancer. They looked after my wife and helped me enormously by explaining what I should expect after surgery and Rose helped explain things from her perspective.

The first day post-op is quite hazy; the effects of the anaesthetic were still wearing off and I felt pretty sore. I was in hospital for five days and after that, we stayed with my friend for two weeks of recuperation.

My catheter was removed after one week, which was an immense relief. Within just two weeks after surgery, I was almost 100 per cent dry, with only occasional, tiny leaks if I moved quickly. There were no mishaps at night, which I thought may be the main risk. I feel so fortunate that my continence returned so quickly; I would have found it extremely hard to live with incontinence for a long period of time.

John and Rose told us all sorts of really useful, practical things. For example, once the dressing comes off the incision wound, clothing can rub and become very sore. They suggested high waist underwear, which would sit above the wound and soft clothing without zips.

When we went back to Cornwall three weeks after surgery, I ordered more painkillers from my GP but found that I didn’t need them. We have two dogs and live close to beautiful beaches – gradually, I started to walk a little further over the weeks that followed.

I saw Mr Doherty to discuss the pathology results. He took 23 lymph nodes during surgery and one of them contained cancer cells. He also explained that my cancer was more aggressive that tests before surgery had suggested: my Gleason score was 4/5 rather than 3/4.

I tried to put things at the back of my mind until the three month check-up, when my PSA would be measured and we would have a clear idea of whether treatment had been successful. Mr Doherty seemed just as delighted as I was when he told me that my PSA reading was 0.003ng/ml.

I feel very fortunate – I am thankful for my wonderful wife and friends and that I was directed to the Birmingham Prostate Clinic. I feel that I should have had better guidance when my PSA was at 8.1 – I should have had a biopsy then and got earlier treatment. If I had undergone surgery elsewhere, I don’t know whether lymph nodes would have been removed; if they hadn’t, cancer would have been spreading into the rest of my body by now. I am very grateful to be looking at a future free from cancer and I know things could easily have been very different. I still have a follow up test to come which will be 12 months after surgery and hopefully, I will be given the all clear.”