Allister’s cancer story

Allister Murphy (57), from Newtownabbey, was diagnosed with advanced prostate cancer in 2008 and has had first-hand experience of the inequality of access to cancer drugs in Northern Ireland. He says:

“It was Christmas 2007 at an office party when I noticed a tiny speck of blood in my urine. Years previous I had kidney stone problems and assumed it had reared its head again, so I went to my GP to check it out. When he asked my age (at the time 51), he said he’d take a urine sample and also a blood sample for a PSA (Protein Specific Antigen) test – just to rule out any prostate problems.

“When the results came back my GP said that kidney stones were not the problem and that he’d like to run the PSA test again. The normal PSA score for a healthy man is under 4.  My PSA score had come back at 153 – a likely indication of prostate cancer. The repeated test came back at 168. It was rising. A biopsy was arranged immediately and they quickly confirmed it was prostate cancer.

“At this point I was shocked but hopeful figuring it was something that could be ‘fixed’.

Bad news

“My consultant urologist carried out a MRI and bone scan and on 4th February 2008 I got the results. I was told that the cancer had spread to my pelvis, spine, ribs and shoulders – that it was incurable. In a state of confusion I asked, “What does incurable mean?” and was told that I was going to die – that my cancer would kill me.

“I felt like I had been kicked in the stomach. My wife was in tears and I was in a daze. In fact, looking back now, I remained in that daze for six months. I couldn’t believe it. I was fit as a fiddle, had experienced no symptoms at all and wasn’t in any pain – I couldn’t comprehend how sick I was when I felt so well.

“I asked the consultant how long I had left. He said that if he put me on hormone therapy it should buy me two to three years. My cancer was highly advanced by the time it was diagnosed.

“He also suggested that I could be a candidate for clinical trials in the Cancer Centre at Belfast City Hospital and referred me to an oncologist.

Clinical Trials

“I asked how long the clinical trials could give me. The oncologist said, ‘Let’s get you to five years and then we’ll see.’  To hear those words was like magic. These drugs could give me 2 – 3 more precious years than I’d first thought. It was then that I decided I was going to fight this the whole way. I walked out of the appointment and immediately signed up to run in the next Belfast marathon. Nothing was going to stop me.

“In March 2008 I started my first clinical trial. It allowed me access to two drugs that are not approved for use on prostate cancer and wouldn’t have been available to me otherwise. Over the course of the trial (two years) my PSA score went down to 1.7, well under the normal score of 4, and my quality of life improved significantly.

“In July 2012 I started to feel unwell again and underwent 10 cycles of chemotherapy before going on Abiraterone – the recommended course of treatment for advanced prostate cancer. While the chemotherapy worked well for me, the Abiraterone didn’t and my PSA score rocketed. I found myself in a lot of pain and that’s when they spotted that the tumours on my spine were staring to grow again. I was given a course of radiotherapy that successfully helped to reduce the size of the tumours before I could move on to my next course of treatment.

What next?

“At this stage a previously unlicensed drug, Enzalutamide, was due to become available on the NHS on 31st January 2014. My oncologist recommended that this would be my next course of treatment.

“The day before NICE approved it for use in the NHS, they amended their guidelines and advised that it would not be available to men who had previously tried Abiraterone, ruling me and the majority of prostate cancer patients out from accessing it. Although by March Enzalutamide was available through the Cancer Drugs Fund, it was still not accessible to patients living in Northern Ireland. I had no other option but to go back for more chemotherapy.

“In August 2013 I was able to take part in a second clinical trial using a drug (Alpharadin aka Radium 223). The drug worked amazingly well for me – it held my PSA score down and slowed the progress of my disease.

“Although Alpharadin was trialled in Northern Ireland it’s unavailable to cancer patients living here (unless through trials or by qualifying with ‘exceptional’ biological circumstances) but accessible to patients living in England through the Cancer Drugs Fund. Where is the sense in that? There are so many men living here that could benefit from that drug but they’re being denied the same access due to their postcode.

U-turn

“Then, NICE reversed its decision on Enzalutamide and it is now, in theory, available to me again.  I’m on my thirteenth cycle of chemotherapy and hope to start Enzalutamide in the near future, depending on the success of the treatment.

“The situation is extremely unfair and so frustrating. There are 40 cancer drugs in the Cancer Drugs Fund (CDF) that are available to cancer patients in England but not here. It’s ironic, given that a number of the drugs on the list were trialled in NI, a world leading trials centre, some are not accessible to patients living here. As part of the UK why do the same access rights not apply to people living in NI?

“The CDF in England is funded by the treasury – I pay my taxes so why am I not allowed access to drugs that could give me more time with my family?”