A woman who felt “helpless” after seeing her family being devastated by deadly brain tumours has called for more research and funding.
Claire Cordiner, 54, who lives in Edinburgh, lost her mother and her youngest sister to a glioblastoma a year apart, and now her 18-year-old nephew is receiving palliative care with the same tumour.
Experts say the chances of three generations of the same family being diagnosed with the same brain tumour are less than one in a billion.
Mrs Cordiner said brain tumours have “devastated” her family and said it was “disgraceful” there was so little funding to tackle them.
“So much more needs to be done to research this cruel disease,” she said.
“Brain tumours have absolutely devastated our family. They are so unpredictable and can affect anyone at any age. I felt totally helpless not being able to do anything for Mum and Angie, and I feel helpless now for my nephew Max.”
Her mother, Margaret O’Kane, who was from Wishaw, died in October 2008 after she was diagnosed with a glioblastoma in 2007.
Her sister Angie Jones, who was from East Kilbride, died in December 2009 after being diagnosed with a tumour in 2004.
In 2004, Mrs Jones started getting pains in her legs, and they would occasionally give way.
She also experienced “jerking movements” in her arms.
Her GP sent her to University Hospital Hairmyres in East Kilbride where an MRI scan revealed the tumour.
Mrs Cordiner said: “I was really upset but Angie remained upbeat. She initially refused treatment because she was trying for a second child, but when she was unable to become pregnant she began chemotherapy and radiotherapy.”
In November 2009, Mrs Jones was told no more treatment was available to her.
On December 4 2009, she died at home with her husband, Kevin, by her side.
Mrs O’Kane attended hospital in 2007 after thinking she had suffered a mini stroke.
Ms Cordiner said: “Mum was discharged and had been OK, but in November she was suddenly unable to hold a conversation. She went back to hospital and had an MRI scan which revealed two brain tumours. I was devastated.”
It was at this time Ms Cordiner was also going through treatment for breast cancer.
“It was a difficult time because Angie was going through her own treatment, and I was also going through treatment for breast cancer.
“Mum had an operation but they could only remove part of one of the tumours. Mum had one week of radiotherapy but that was it,” she added.
“They didn’t think she would have been able to manage any more treatment. Mum died on October 1 2008, just a year after being diagnosed.”
In another blow to the family, Ms Cordiner’s nephew, Max Jones, was diagnosed with the same tumour his mother and grandmother had died from in June 2022.
He was often sick and started getting pains in his legs.
The pain became so unbearable he went to University Hospital Hairmyres, where a CT and MRI scan discovered a tumour on his brain.
He had surgery on the tumour at the Queen Elizabeth University Hospital in Glasgow and was transferred to the Beatson Cancer Centre for further treatment.
Mrs Cordiner said: “I couldn’t believe it, especially because Max is so young. He was a healthy young man so it was totally unexpected. He had five weeks of chemotherapy and radiotherapy which was quite intense.
“He was doing OK for a while but he ended up back in hospital in January 2023. Two more tumours were found, one on his brain and one on his spine, so the treatment obviously wasn’t working. Max is now on end-of-life care at Kilbryde Hospice.”
The story marks Wear A Hat Day for the charity Brain Tumour Research, which raises funds to help find a cure for the disease.
Dr Karen Noble, director of research, policy and innovation at Brain Tumour Research, said: “To have three generations of one family diagnosed with the same deadly brain tumour is extremely rare; less than a one in a billion chance.
“We occasionally hear of instances where siblings are diagnosed, but this is the first case of its kind we at the charity Brain Tumour Research have been made aware of.
“Claire’s story is devastating and defies belief. The pain that brain tumours have caused her family is unimaginable and we’re so grateful to Claire for sharing her story with us.”
