A GRANDFATHER who was diagnosed with brain tumours so rare he is believed to be the only patient with them in the UK has told how a treatment newly available in Scotland "shrank" them.
Paul Dornan, 59, from Alva in Clackmannanshire, was first diagnosed with cancer on the day of his son's 30th birthday in May 2017.
Mr Dornan's GP had referred the chemical industry consultant for tests after he began passing a small amount of blood in his urine.
Scans revealed a 10-centimetre (four inch) tumour in his left kidney which was removed in an operation a few weeks later.
However, his surgeon cautioned that its position - close to the aorta, the main vessel carrying blood away from the heart - meant they could not cut out all the cancer.
"It was so close to my aorta, if I'd had a bleed it would have been fatal," said Mr Dornan.
"The doctor cautioned that there was a chance it'd grown back. Unfortunately a follow up scan later than summer showed it had spread, and there were secondary tumours in my abdomen, my neck and my chest."
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Mr Dornan was recruited onto a clinical trial involving the drug Keytruda - also known as pembrolizumab - which was not at the time available on the NHS.
Keytruda, an immunotherapy drug, made headlines in 2015 when former US president Jimmy Carter revealed it had led melanoma which had spread to his liver and brain to vanish.
In Mr Dornan's case, the therapy kept the tumours "at bay" and eventually doctors decided he was doing well enough to stop treatment altogether.
Then in April this year a scan during a routine check-up revealed something none of the medics had been looking for.
"I usually get scanned from the neck down but - purely by chance - the hospital at Larbert extended that slightly up to my head and they found a number of brain tumours," said Mr Dornan.
"They weren't sure how long they'd been there because I wasn't routinely brain scanned.
"I have a relatively rare form of kidney cancer called chromophobe and secondary brain tumours resulting from that are almost unheard of.
"I asked Kidney Cancer UK, the charity, if they know of anyone else in the UK with these and they said 'no'. I've only managed to find one person in California who has a similar brain tumour."
"That explained why they hadn't been checking for them."
In May, the father-of-three was admitted onto a new clinical trial, studying the impact of Keytruda in combination with a different drug for advanced kidney cancer - Inlyta (axitinib).
Keytruda was administered every six weeks at the Beatson via an intravenous infusion, while Inlyta is taken as a pill twice a day.
The results to date have been impressive.
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Mr Dornan said: "When I got my follow up scan 12 weeks later there was a reduction in all my tumours, not just the brain tumours, but all of them.
"That was really the first time since I was diagnosed in 2017 that I'd had any positive response.
"Previously it was just a case of stabilising them, but nothing where you could say there had been a distinct reduction."
Scotland has now become the first part of the UK to approve the combination therapy on the NHS for eligible kidney cancer patients. It comes just weeks after NICE rejected it for patients in England and Wales.
The Scottish Medicines Consortium approved it following evidence from clinicians, patients and clinical trial results showing that 81% of patients were still alive after 18 months compared to 71% of those on an existing cancer drug.
Patients on the Keytruda-Inlyta regimen also lasted around 15 months without disease progression, compared to 11 months for patients in the control group.
The incidence of kidney cancer is soaring - especially among men - for reasons that remain unclear.
In Scotland it is now the fifth most commonly diagnosed cancer in men, with 703 new cases in 2018, up 26% over the past decade.
Only rates of thyroid and liver cancer are rising faster.
Obesity and smoking are known risk factors for kidney cancer, but improvements in medical imaging may also be detecting more cases.
It is also one of the hardest to treat, partly because it is often diagnosed late, there are no screening programmes, and early symptoms can be easily missed.
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Mr Dornan remembers experiencing a 'niggling' pain in his back around two months before he noticed blood in his urine, but thought nothing of it at the time.
"I was moving furniture and I thought I'd maybe strained my back, but it felt different. It went away - a day later it was gone - and I never thought twice about it."
Professor Robert Jones, Director, Cancer Research UK Clinical Trials Unit, University of Glasgow, said: “I’m delighted that this new treatment combination will now be available to kidney cancer patients across Scotland. Despite the emergence of many new treatments in recent years, kidney cancer, in its more advanced forms, remains a lethal disease.
"This news of additional treatment options being made available for patients with renal cell carcinoma is very welcome in Scotland.”
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