A woman was given six months to live after she was diagnosed with a brain tumour, which was missed on a scan years before.
Glenn Lilley, 71, from Plymouth, was given the life-limiting prognosis after she was diagnosed with a meningioma in 2021. In 2017 she began suffering with tinnitus and vertigo. Following a scan, an ear, nose and throat specialist (ENT) said there was no cause for concern.
In July 2021 she collapsed at home causing her to temporarily lose her memory, and an MRI scan confirmed a large mass on her brain. Glenn was warned without surgery she would die within months.
The-grandmother-of-five said: “I thought I was 41, not 69, which was my actual age at the time. I’d lost years of my life and thought my boys, who were grown adults, were still teenagers.”
She added: “With my full medical notes in front of him, Professor Whitfield said the mass could be seen on the scan from 2017 and the ENT specialist had missed the then grape-sized mass. He commented on how aggressively the tumour had grown since that scan.
“I’m very much a get on with it type of person, perhaps that’s my Yorkshire roots coming through. Rather than harbouring any thoughts of anger towards the ENT specialist I was determined to fight this disease.
“I hold no blame for the fact the tumour was missed. The way I see things is: a gynaecologist wouldn’t be looking at your feet, so I understand how the tumour could have been missed on the scan looked at by the ENT doctor.”
Glenn’s operation was delayed, following two cancellations due to high COVID-19 cases. In the meantime, she was given steroids to help reduce the build-up of pressure on her brain, and within six weeks gained 3 stone in weight.
She had an 11-hour operation in September and is now monitored with regular scans. She has been told her brain tumour will grow back, but it could take 10 years.
She said: “I live with impairments to my vision and I‘m deaf in one ear. I have headaches but all of this is manageable in the grand scheme of things. Although I was told it was low-grade, there is every chance it will come back and if it does then I will likely need radiotherapy as further surgery could leave me with life-changing injuries.
“I am pleased with the way things played out for me. In 2017 the tumour wasn’t immediately life-threatening, and I wouldn’t have wanted to spend the past four years knowing about it and being seen as poorly.”
One in three people knows someone affected by a brain tumour. In the UK, 16,000 people each year are diagnosed with a brain tumour, yet just 1% of the national spend on cancer research has been allocated to brain tumours.
Her story has been motivation for her daughter-in-law Stacey, who is taking part in the Brain Tumour Research charity’s Cycle 274 Miles in August challenge.
A charity which Glenn is now campaigning alongside to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.
She said: “I’m not sure that many people realise brain tumours are the biggest killer of children and people under 40 than any other cancer.
“I’ve encouraged everyone who will listen to. I’ve had a wonderful life and feel very lucky, now I am beating the drum for the young people living with the disease.”
The charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Brain Tumour Research wants the Government to recognise brain tumour research as a critical priority. It says the increase in research investment would put brain tumours in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.
Mel Tiley, community development manager at Brain Tumour Research, said: “We are grateful to Glenn for supporting our petition and helping to raise awareness.
“For too long governments have put brain tumours on the ‘too difficult to think about’ pile. Five years after the Government announced £40 million for brain cancer research, less than £11 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.
“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”
To sign and share the petition before it closes at the end of October 2023, go to www.braintumourresearch.org/petition
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
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