Allister was 51 when he was diagnosed with advanced prostate cancer in 2008. He was feeling fit and healthy and, like many men, he had no symptoms. When he was diagnosed, the cancer had already spread around his body. Here, Allister talks about having treatments for advanced prostate cancer.

Sadly, Allister died in April 2016. His family has given their permission for us to share his story, in the hope that it will help other men and their families.

Photo of Allister

Allister's experience

When I was diagnosed with prostate cancer, my first instinct was that I wanted to live as long as possible. My cancer was advanced and my PSA was high. But I was young, fit, and ready to fight.

Hormone therapy

My first treatment were hormone therapy injections called  goserelin (Zoladex®). After starting the treatment, I was still living a relatively normal life. I had a few side effects – mostly fatigue and hot flushes. It definitely helped that I was in good physical shape to start with.

I responded really well at first – my PSA level plummeted. Everything was looking up and I felt really good about it all.

After about 18 months on Zoladex®, the first blow came – the hormone therapy wasn’t working. My PSA jumped back up into the hundreds. My cancer wasn’t under control and I was starting to get aches and pains around my body. 

After about 18 months on hormone therapy, the first blow came – it wasn’t working.

After my first hormone therapy stopped working

There are lots of treatments for advanced cancer and I wanted to know which treatment was best. But no one can tell you how you’ll respond to a treatment – it’s so individual.

I desperately tried to find men with the same cancer and treatment and see how they responded and what side effects they had. I soon learnt that no two men are the same. Some respond well to one treatment and badly to something else.

I responded really well to steroid treatment for around 18 months. During the treatment, I played rugby and football, and even ran a marathon for Prostate Cancer UK.

Clinical trials

Clinical trials can seem daunting as no one wants to be an experiment and you don’t want to go on a trial out of desperation. But if you can find a treatment that’s suited to your cancer, it can be really positive. I’ve been on two trials – for Radium 223 and the STAMPEDE trial.

I learnt that a lot of the research is about what order you have treatments in, or whether you have two treatments at the same time or separately. It’s a lot to get your head around, but finding out how clinical trials work makes it a lot less confusing.

Finding out how clinical trials work makes it a lot less confusing.

The STAMPEDE trial looked at whether other treatments should be used with hormone therapy when men are first diagnosed with advanced prostate cancer. It found that using chemotherapy with hormone therapy can prolong a man’s life. I wasn’t given chemotherapy, so I didn’t get that benefit. But it still felt good to be part of something that would improve treatment for other men in the future.

When I was on the trials, I felt really looked after – I got a lot of monitoring and was in regular contact with the doctors and nurses. I found it very reassuring.

I’m on ad hoc treatments now. My oncologist sees me regularly and we decide what I need. I sometimes have a blood or platelet transfusion to keep me going.

Thinking about the future

My quality of life is ok – some weeks are good and some weeks are bad. My physical health isn’t as good as it was but I’m not in constant pain.

How long will this last? I’m not sure. My cancer is now in my spine, bones, and head so things don’t look too good. But then I was diagnosed with advanced cancer eight years ago. So no one can tell you what the future holds. For me, it’s better to stay positive rather than count down the days.

My tips for other men

  • Talk to someone in the same position. It’s a cliché, but there is nothing like talking to someone who is in or has been in a similar position. No two men are the same, but they do know what you’re dealing with. I’ve connected with other people who are in the same boat through the online community. I’ve met up with people face-to-face and had a chat over a beer. It makes you feel like you’re not alone.
  • Keep as fit and healthy as you can. I’ve always been physically fit and I think it’s one of the things that has helped me survive for so long. Although my days of rugby and football are now behind me, I do stay as active and eat as healthily as I can.
  • Follow the research. Seeing the advances in prostate cancer treatment has helped me stay positive. Two of the treatments I’ve had didn’t even exist on the day I was diagnosed. It makes me hopeful for the future.
  • Stay positive. It’s not always easy but it helps when you see other people who are doing well.  I’ve now survived eight years with advanced prostate cancer. I hope other people will read my story and it will give them hope.

There is nothing like talking to someone in the same position.

 

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