A mother from Nottingham has described the moment she felt she had been “handed a death sentence” during a phone call from the hospital with her biopsy results, following two brain tumour diagnoses nearly 20 years apart.
Charlotte Curnow, 56, is now calling on the Government to increase investment in research to improve treatment options and outcomes for patients. Her first diagnosis came in 2004, when an MRI scan for hearing problems unexpectedly revealed a low-grade glioma on the right frontal lobe of her brain.
From monitoring to surgery
After three years of monitoring, Charlotte underwent surgery in 2007 to remove the mass. Following years of stable scans, doctors suggested discharging her, but she requested to continue having MRI scans every two years.
In 2023, those scans revealed the tumour had started growing again, but this time it was an aggressive and incurable glioblastoma – a brain cancer with a poor prognosis. According to Brain Tumour Research, just one-third of people diagnosed with glioblastoma survive beyond a year, and there have been no new treatments approved since 2005.
Government commitment and funding gap
Last week, the Government made a historic commitment to improving survival rates for brain tumour patients, following a meeting between Prime Minister Andy Burham and Commonwealth swimmer and brain tumour patient Archie Goodburn. Brain tumours kill more children and adults under 40 than any other cancer, yet funding remains critically low.
The charity said just 1% of the national spend on cancer research was allocated to brain tumours between 2002 and 2021. New analysis from Brain Tumour Research shows that nearly three-quarters (74%) of research funding into brain tumours comes from the charity sector, compared to just 26% from the Government. Charlotte joins the charity’s call for increased investment of at least £45 million a year in research to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
‘I was completely dumbstruck’
Charlotte said: “Before my diagnosis, life was busy but ordinary. I’d worked in financial services for most of my career and was looking forward to returning to work after maternity leave. My son, Elliott, was still a baby and, like any new mum, my world revolved around him. I’d experienced some problems with my hearing, so my consultant arranged an MRI scan before I was due back to work.
“I felt completely well and had no reason to think anything serious was wrong, so when the scan showed a mass on the right frontal lobe of my brain, I was completely dumbstruck. I didn’t have any symptoms at all. One moment I was planning my return to work and the next I was being told I had a brain tumour. It felt like I was carrying a time bomb inside my head.”
Charlotte was initially placed on a watch-and-wait programme, undergoing regular MRI scans for three years. When the tumour grew, she underwent a craniotomy in 2007 and a biopsy confirmed it was a slow-growing grade 2 glioma. Around 10 years later, her consultant believed changes visible around the surgery site were scar tissue rather than tumour regrowth and suggested she could stop having scans and be discharged. Charlotte did not feel comfortable ending the monitoring and agreed to a compromise to continue having an MRI every two years.
Second diagnosis and treatment
Charlotte said: “Six years later, an MRI scan showed the tumour had started growing again. Around that time, I also started experiencing seizures. My hearing and vision would become strange before my heart started racing – giving me just enough time to lie down if I could.
“In August 2023, I underwent my second craniotomy. Because the tumour was deep within my brain, my surgeon carried out a partial debulking rather than attempting to remove all of it, as preserving my quality of life was incredibly important to me.
“The surgery went well and, after six weeks recovering at home, I was preparing to start radiotherapy and chemotherapy when I received a phone call with the biopsy results. When I heard the words ‘grade 4 glioblastoma’, it felt like I’d been handed a death sentence. I went downstairs to tell Elliott the news.”
The charity said brain tumours are indiscriminate; they can affect anyone at any age and nearly 13,000 people in the UK are diagnosed with a primary brain tumour every year. Six weeks after surgery, Charlotte began radiotherapy alongside chemotherapy, followed by a further six months of chemotherapy. She completed treatment in June 2024, but it took another six months before she began to regain her physical strength.
Living with ‘scanxiety’
Charlotte said: “One of the hardest things to live with is ‘scanxiety’. I try not to let the worry consume every day leading up to the appointment and instead remind myself that, although my diagnosis is devastating, I do at least know what I’m dealing with. I know the warning signs to watch for, such as seizures or weakness and numbness in my left leg and I know when to seek help.
“There are so many people who don’t have those answers yet, and reminding myself of that helps me stay grounded. No matter how positive you try to be, waiting for MRI scans and then sitting in the clinic waiting for the results never becomes easy. Over time, though, I’ve learned to manage it better.”
Since finishing treatment, Charlotte has reduced her working hours and is determined to make the most of her time with family and friends. One milestone she feared she would never see was Elliott’s university graduation, but she was able to watch him graduate last year.
Raising awareness and funds
Charlotte has now turned her attention to raising awareness and funds for research into brain tumours. She completed the Brain Tumour Research 88 Squats A Day in July challenge to support research at the Brain Tumour Research Centre of Excellence at the University of Nottingham. Scientists there are using artificial intelligence, advanced brain imaging, and genomic techniques to better understand glioblastoma recurrence and accelerate progress towards improved treatments.
Charlotte said: “One thing I feel incredibly strongly about is the need for more research. Brain tumours remain desperately underfunded compared with many other cancers, and yet the impact they have on people’s lives is devastating. Better research means better treatments and more hope for families like mine.
“If I could leave anyone with one message, it would be not to be frightened of asking questions or speaking up for yourself. I truly believe continuing my MRI scans saved my life and I’m so grateful I trusted my instincts all those years ago.
“I also want people to know that statistics don’t define you. None of us knows exactly what the future holds, so I’ve chosen to focus on making memories, spending time with the people I love and saying yes to every opportunity that comes my way.”
Dr Karen Noble, director of research and policy at Brain Tumour Research, said: “Charlotte’s story is a powerful reminder of the devastating impact a brain tumour can have, not only on the person diagnosed but on everyone around them. One in three people knows someone affected by a brain tumour and nearly 13,000 people are diagnosed with a primary brain tumour each year.
“The Government has seized the opportunity to place research at the heart of transforming outcomes for brain tumour patients. We are optimistic that this renewed focus will help ensure discoveries in the laboratory actually make it to the patients who so desperately need more options.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK and campaigns for the Government and larger cancer charities to invest more in research into brain tumours. The charity is the driving force behind the call for a national annual spend of £45 million to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
