A SCOTTISH man searching for the 14 others diagnosed with his rare cancer has found four – but the condition could be even rarer than previously thought.
Experts told Kevin O’Neil he was one of only 15 people worldwide with malignant myopericytoma.
The condition led to the growth of a 10kg tumour on his shoulder which surgeons compared to a bowling ball.
Removal also required the loss of part of his shoulder and several ribs and chronic pain led to his early retirement from the Unison union on medical grounds.
Oncologists told the Fife man he was one of just 15 people in the world found with the condition.
But a US specialist has now told the Inverkeithing dad that this is wrong – and only 11 other people have the cancer.
Through his One of Fifteen campaign, O’Neil has now tracked down four others after two years. They live in Australia, Brazil and the US.
However, an Arkansas-based pathologist has now revealed there may be only a dozen such patients in total.
O’Neil, a father-of-three, says finding any others is “worse than a needle in a haystack”. However, he will continue his campaign in a bid to create an international support network.
He said: “I never thought I’d actually find anybody.”
Myopericytoma tumours are normally benign and mostly affect men aged 35-40. However, in rare cases they can become life threatening.
O’Neil underwent 30 rounds of radiotherapy in a failed attempt to shrink the shoulder mass before surgeons acted to save his life.
The 12-hour operation was carried out at the Royal Infirmary in Edinburgh, with O’Neil placed in an induced coma for two and a half days.
Prior to this, he had two tumours removed from his spine and still undergoes regular scans, assessments and treatments, such as botox injections to lessen pain.
He is supported by his wife Kirsty, who works in financial services, and does as much as he can with their five-year-old son Nathan. His older children, aged 19 and 21, live in the north east.
Meanwhile, he is also preparing to hold an 11-hour fundraiser for cancer charities.
Inspired by his love for Marillion – once fronted by Midlothian musician Fish – Prog in the Park will bring a day of prog-rock sounds to the Glen Pavilion in Dunfermline on April 6 to raise awareness of malignant myopericytoma and cash for Sarcoma UK and Maggie’s Centres.
It is hoped that hundreds of fans will turn out to support the event, salted for two days before his 50th birthday.
O’Neil – who has seen Marillion 140 times – says music is his “escape” from illness. He told The National: “I have been ill for 12 years – I applied for ill-health retirement before I had the operation because the pain was so bad. I’m not bitter about it, I just get on with things.
“I can never fully thank NHS Fife and NHS Lothian for saving my life, but I can surely do something for charity.”
Tickets for Prog in the Park are available via ticketlab.co.uk.
Why are you making commenting on The National only available to subscribers?
We know there are thousands of National readers who want to debate, argue and go back and forth in the comments section of our stories. We’ve got the most informed readers in Scotland, asking each other the big questions about the future of our country.
Unfortunately, though, these important debates are being spoiled by a vocal minority of trolls who aren’t really interested in the issues, try to derail the conversations, register under fake names, and post vile abuse.
So that’s why we’ve decided to make the ability to comment only available to our paying subscribers. That way, all the trolls who post abuse on our website will have to pay if they want to join the debate – and risk a permanent ban from the account that they subscribe with.
The conversation will go back to what it should be about – people who care passionately about the issues, but disagree constructively on what we should do about them. Let’s get that debate started!
Callum Baird, Editor of The National
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here