Charlotte Curnow, 56, from Nottingham, said a hospital phone call delivering her biopsy results felt like being "handed a death sentence". She was first diagnosed with a low-grade glioma in 2004, and in 2023 scans revealed the tumour had returned as an aggressive and incurable glioblastoma. She is now urging the Government to increase investment in research to improve treatment options and outcomes for patients.
Two Brain Tumour Diagnoses Nearly 20 Years Apart
Charlotte was first diagnosed with a low-grade glioma in 2004 after an MRI scan carried out for hearing problems unexpectedly revealed a brain tumour on the right frontal lobe of her brain. Following three years of monitoring, she underwent surgery in 2007 to remove the mass. After years of stable scans, doctors suggested discharging her, but she requested to continue receiving MRI scans every two years.
In 2023, those scans revealed the tumour had begun growing once more, but on this occasion it was an aggressive and incurable glioblastoma – a form of brain cancer carrying a poor prognosis. While just one-third of those diagnosed with glioblastoma will survive beyond a year, no new treatments have been approved since 2005, according to Brain Tumour Research.
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 Burnham and Commonwealth swimmer and brain tumour patient Archie Goodburn. Brain tumours claim more lives among children and adults under 40 than any other cancer, yet funding for research remains critically inadequate.
Between 2002 and 2021, just 1% of the national spend on cancer research was directed towards brain tumours, the charity revealed. Fresh analysis from Brain Tumour Research has demonstrated that nearly three-quarters (74%) of research funding into brain tumours is sourced from the charitable sector, compared to a mere 26% from the Government.
Charlotte has now joined the charity in urging the Government to back increased investment of at least £45 million a year into research, with the aim of improving survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
'Dumbstruck' by Diagnosis
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 had a craniotomy in 2007 and a biopsy confirmed it was a slow-growing grade 2 glioma. She continued to receive regular MRI scans following surgery.
Request to Continue Scans
Roughly a decade later, Charlotte said her consultant believed changes visible around the surgical site were scar tissue rather than tumour regrowth, and suggested she could stop having scans and be discharged. Charlotte was not comfortable with ending the monitoring and reached a compromise with her consultant to continue having an MRI every two years.
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 explained that brain tumours are indiscriminate; they can strike anyone at any age, with nearly 13,000 people across the UK diagnosed with a primary brain tumour annually. Six weeks following surgery, Charlotte commenced radiotherapy alongside chemotherapy, followed by an additional six months of chemotherapy. She finished treatment in June 2024, though it took a further six months before she started to rebuild her physical strength.
'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 completing her treatment, Charlotte has cut back her working hours and is focused on cherishing every moment with her loved ones. One milestone she feared she might never witness was Elliott's university graduation, yet she was fortunate enough to see him collect his degree last year.
Raising Awareness During Time Left
Charlotte has since channelled her energy into raising awareness and funding for brain tumour research. She took part in the Brain Tumour Research 88 Squats A Day challenge in July to support vital research, including that being carried out at the Brain Tumour Research Centre of Excellence at the University of Nottingham. Scientists at the centre are harnessing artificial intelligence, advanced brain imaging and genomic techniques to deepen their understanding of glioblastoma recurrence and drive progress towards more effective 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 finances sustained research at specialist centres across the UK, while campaigning for both the Government and larger cancer charities to significantly increase investment into brain tumour research, with the aim of accelerating the development of new treatments and ultimately discovering a cure. The charity is the driving force behind calls for a national annual expenditure of £45 million to bring survival rates and patient outcomes in line with those of other cancers, such as breast cancer and leukaemia.
