Prostate cancer and me: Clinical trials

Chris was diagnosed with localised prostate cancer in 2011, aged 56.

“I didn’t have any symptoms. I was diagnosed by chance when an email came round at work, offering PSA testing at a local rugby club. My GP referred me to the specialists. I spoke to a surgeon and a radiotherapist, but it seemed to me that these treatments had a lot of possible side effects.

“I also did a lot of internet research and found out about possible clinical trials. I’d asked the other specialists about some options like high intensity focused ultrasound (HIFU), but they mostly said ‘It’s experimental. It sounds good, but how do they know where the cancer is?’ So I had a good question to ask once I’d found out about a HIFU trial at University College London Hospital (UCLH) – the INDEX trial.

“They did an MRI scan to check I was suitable – and I was, because the cancer was only in half my prostate. They showed me the scans and pictures, but also told me how they analysed them, told me the pros and cons of the trial and went through the procedure fully. I quickly became more and more comfortable there.

“I liked the idea of a clinical trial and experimental treatment. It made me interested in medical science and how it works. If no-one took part in trials, then no medical innovations – even things that are widely available now – would ever happen. I always knew what to expect and I could ask a lot of questions.

“The UCLH team was in constant touch – not like normal care. They have a lot of time for you. And I knew if something went wrong there were still options that wouldn’t be worse than the standard treatment. I found the whole experience very positive.”

In 2003 Ian, aged 55, was diagnosed with advanced prostate cancer, which had spread to his bones.

“I was put on hormone therapy for almost two years, before it stopped working. My oncologist told me there were no treatment options left, except palliative care(treating my symptoms but not the cancer).

“I wasn’t going to accept this so I started looking for other possibilities, and my oncologist referred me to the Royal Marsden Hospital. They called a couple of weeks later to tell me I was eligible for a clinical trial of docetaxel and another drug called figitumumab.

“The treatments were experimental, but I didn’t have any other options, so I thought I’d give it a go. I’d been given very good information about the drugs and possible side effects. And I knew if I decided to stop the trial, it wouldn’t affect my care. Eventually, after nearly three years, my prostate cancer started to progress.

After taking part in a couple more trials, I started on one for abiraterone, which I took for three-and-a-half years before my cancer started to grow again.

“At that point, I mentioned to my study nurse that four of my cousins had prostate cancer and that led to me taking part in a genetics study trialling a drug called olaparib. I took that for two-and-a-half years before it stopped being so effective.

“By now, all the trials had kept me alive for seven years. In that time, clinical understanding of a type of radiotherapy (intensity modulated radiotherapy) had progressed and was now feasible for me. I had 36 days of IMRT in 2013 as part of a trial. The side effects have been difficult but manageable. And, touch wood, it’s knocked out a cancer that I’d been told was going to kill me in the near future.”

How do I find out about trials for prostate cancer?

• You can ask your doctor or nurse if there are any local or national trials that may be suitable for you
• You can call our Specialist Nurses on our confidential helpline
• Or search online lists of trials, such as the NHS Choices clinical trials page.