How the outlook for men with advanced prostate cancer has been transformed

Martin Raybould with his wife Mo

When Martin Raybould was diagnosed with advanced prostate cancer, his future beyond two years was uncertain. But today – more than five years since that diagnosis – his cancer is stable. Mr Raybould explains how he copes with advanced disease and how the outlook for men like him has been transformed in recent years.

“We were on holiday in Spain, staying in a really nice villa. Quite suddenly, I had considerable pain in the lower abdomen area. When I got home, I saw my GP who diagnosed prostatitis. After a week, the pain was getting worse, so I went back to my GP and asked for a referral to a specialist. He recommended Mr Doherty at the Birmingham Prostate Clinic.

“Test results showed my PSA reading was 554. Mr Doherty had never seen anyone with a reading that high who did not have cancer. He explained it would not be possible to operate and remove all the cancer, then phoned his colleague, Dr Ahmed El-Modir who came to see me straight away, that same evening. Dr El-Modir took a piece of A4 paper and drew three circles: in the first circle, he described what would happen in year one, in the second circle, what would happen in year two and in the third circle, he explained that it would be difficult to predict what would happen in year three.

“I was 66 years old and in one evening, my life changed completely. As we would say in the Black Country, don’t buy any new suits or long playing records. The first, urgent treatment was radiotherapy, as the cancer had spread to the top of my neck. I had to wear a face mask during the treatment, which wasn’t pleasant and I had to have about 15 sessions. I have also had surgery to remove metastases from my bladder, then further radiotherapy treatment to my spine and abdomen.

“I went straight onto hormone therapy when I was diagnosed and I still take oestrogen tablets, steroids and have hormone implants every three months. I do need to take a lot of medication on a daily basis. This affects my life in every shape and form. For me the main problem now is often urgently needing the bathroom. Because I needed a lot of radiotherapy, the size of my bladder has shrunk to almost a third of its normal size. Every trip out has to be planned around where the toilets are and for that reason, getting on a plane and going abroad on holiday isn’t something I feel I can do any more.

“But more than five years on since my diagnosis, I still haven’t had any chemotherapy. My PSA is stable at a reading of 1 and there is no cancer in my bones. I know the cancer won’t ever go away – it is still there in my bladder wall and abdomen – but the drugs are holding it exactly where it is.

“I see Dr El-Modir every three months and each time, he smiles and says how well everything is working. Of course cancer has drastically changed my life. While I was with my grandchildren recently, I started to feel depressed about what the future holds for me as they grow up. But I have absolute confidence in Dr El-Modir and the Birmingham Prostate Clinic – from the moment I first went to the clinic, they have always looked after me so well.

“New drugs are being developed for advanced prostate cancer all the time. Whenever there is a report in the newspapers about a new drug, I get a flood of emails from my friends. I do my own research too and come into clinic with the information printed out. Every time, Dr El-Modir will know exactly what the drug is and whether it is likely to help me.

“It is incredible to think how different things have turned out to my original prognosis. My advice to other men with advanced prostate cancer would be to try to stay positive – treatments have improved so much and new drugs are becoming available all the time. I would say be careful about the internet: you can go online and really scare yourself. Try to be positive and listen to your medical advisers – I can trust my doctor to choose the right combination of drugs for me and access the newest treatments. Overall, for me, the most important thing has been the fantastic support I’ve had from my wife, my son, together with all of my family and friends.”