Ten years ago, Hugh Gunn was diagnosed with advanced prostate cancer and given 18-30 months to live. The Cancer Drugs Fund saved his life

How were you diagnosed with prostate cancer? 

I developed a condition called dermatomyositis, which I could not ignore. It turned out to be the result of a malignant growth – prostate cancer. It is quite rare, apparently.

At what age were you diagnosed, and how did you cope? 

I was 59. At first, I am not sure how I coped. My PSA level was 760, Gleason score eight, and there was a very large spread of the cancer into my skeleton (see box for more details). I found myself in a very black hole. After about two months, I came to the decision to fight it and try to enjoy what time I had left.

Never having run before – and to prove that I was not dead yet – I signed up for the Nottingham Half Marathon. It was very beneficial in a number of ways; the training was arduous but it gave me time to pause, rethink my life and come to terms with what had happened to me. I also met a whole new group of friends and became involved with my local support group, PROSTaid. Most satisfying was the fact that I actually finished the half marathon in 2 hours 49 minutes and raised £2,500.

After that, I decided to give up my business and retire, as well as change my oncologist and become treasurer of PROSTaid. Through this, I also became treasurer of the Prostate Cancer Support Federation when it was first formed. I have now survived for 10 years, living a busy and productive life.

What was your prognosis? 

I was told I had 18-30 months to live, 10 years ago.

What treatment have you received? 

Zoladex (with intermittent therapy) worked for five and a half years and I am still being given it. I also took part in the TRAPEZE clinical trial, where I received a combination of docetaxel and zoladronic acid. I am still taking the latter, a very important treatment to prevent osteoporosis and skeletal-related events. I have also received Zytiga (abiraterone) and Xtandi (enzalutamide).

Were you given treatment choices at any stage? 

I discussed it with my oncologist but, apart from involvement in the trial, options were nonexistent.

Are you happy with the care you received? Could any aspect have been improved? 

On my initial diagnosis, my urologist said that because of the dermatomyositis – treated with 60mg of prednisalone per day – I should be given zoladronic acid for my bones. However, my oncologist said the drug wasn't funded on the NHS and wouldn't give it to me and, for three months, I went between them like a ping-pong ball. A frightened and vulnerable patient should never be put in this position. Since changing oncologist and health area, my treatment has been second to none.

What is the most difficult aspect of your condition?  

Having advanced prostate cancer is like having the Sword of Damocles hanging over you, particularly as time goes on and treatment options begin to run out. I am not frightened of death but the manner in which death happens is a frightening thought.

What are the key challenges facing patients with prostate cancer in the UK?  

The biggest challenge is that you will suffer erectile dysfunction, although with advanced patients on androgen deprivation therapy there is also a loss of libido, which probably makes it easier to cope with. In my own case, the challenge is living every day and wondering how many more days there will be.

What effect do the UK cancer drug commissioning arrangements have on patients?  

I was one of the first men to receive Zytiga through England's Cancer Drugs Fund (after a fight), and so I can say it saved my life.

What message would you give newly diagnosed men?  

Do your homework; if surgery is involved, ask your surgeon how many procedures he/she has carried out. If you have advanced disease, see if there are any relevant clinical trials you can take part in. This could be a lifesaver.

What motivated you to become a trustee for Tackle Prostate Cancer?  

I attended a meeting in London and was impressed with its quality and aims, as well as the sensitivity of the people involved. When they asked for a treasurer, my hand just went up. I didn't tell my wife, although I had to when all the emails came piling in.

What is your greatest hope/fear for the future?  

My hope is that when the end comes, I will not be in pain. My fear is that I will be. Over my 10 years of 'extra life', I have worked very hard to raise awareness of prostate cancer and, through involvement with NICE, I have tried to ensure that new treatments are made available to patients. My hope is that new genetically based treatments will become successful and available.