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“Research into brain tumours is crucially important”

Ben Johnson, 24, from Islington, was diagnosed with a brain tumour in November 2019, after suffering a seizure while at university in London.

Three cyclists stand with their bikes as they try to raise awareness of the importance of research for The Brain Tumour Charity

Ben underwent surgery twelve days after the seizure and received an initial diagnosis of anaplastic astrocytoma in 2019. Following a second surgery in June 2020, his tumour was classified as a glioblastoma.

There were few clues before diagnosis

Fit and healthy, Ben, who now works as a strategy consultant for Deloitte, had few clues prior to his diagnosis. The week before, he began to experience headaches and mild nausea on waking. These symptoms were easy to ignore. And after taking painkillers, he was able to get on with his day as normal.

Ben said: “Unfortunately I then suffered a tonic clonic seizure at home one evening which my partner witnessed.  She called an ambulance as I had stopped breathing and lost consciousness. Thankfully she was there as I came round as I presumed I’d just fallen asleep while watching TV.”

Treatment

On arriving in hospital, a CAT scan followed by an MRI revealed a brain tumour. Following surgery to remove it, Ben was told it was cancerous.  He had a further round of surgery, and radiotherapy and chemotherapy treatment that finished in May 2021.  Surgeries and treatment did interrupt his studies. With one surgery occurring a week before an exam, but Ben was still able to graduate with a 2:1. 

In July 2021, he took on a coast to coast cycle challenge with his mother and brother, raising money for The Brain Tumour Charity and Brain Tumour Research.

“I am still the same person”

Ben said: “Initially the impact was large. With my friends, family and lecturers all treating me very gently as though I could pass away any second. I found this amusing initially. But then they realised I was still the same person and so returned to treating me normally which I really appreciated.

“My family and partner were both very upset and so I found the most distressing part to be their reactions and my inability to reassure them that I was fine (they kept believing I would ‘break down’ at some point).

“One of the most crucial factors in my recovery was that, although I was a bit thinner and had less hair than before for a while, I was still the same person underneath and could still perform physical tests (such as the cycling challenge) if I put my mind to it. If this hadn’t been the case I may have lost a sense of who ‘Ben’ was, and just seen myself as a ‘cancer patient’ who can’t do what he used to do. 

We need more research

Ben said: “Research into brain tumours is crucially important as, not only can they go undetected for years until already at a late stage prior to diagnosis, as in my case, but the restrictions they can place upon a patient’s life can be significant.

“Research projects such as those funded by The Brain Tumour Charity are crucial to help patients understand potential bodily changes they may experience and to help develop treatments to mitigate symptoms.”

Our research

The Brain Tumour Charity funds pioneering research into brain tumours. This year’s six Future Leaders are talented scientists and clinicians who have been awarded a total of over £1.3m for their innovative research projects that aim to improve our understanding of brain tumours and develop new treatments. Claire Vinel’s research focusses on glioblastoma, the most aggressive brain tumour and the same tumour type Ben is living with.

Picture of Dr Claire Vinel, who does research into glioblastoma brain tumours

Dr. Claire Vinel

Based in the UK at Queen Mary University of London, Dr. Vinel is investigating the relationship between glioblastoma and muscle, with the goal of identifying molecules that promote tumour growth or sarcopenia (muscle loss) that could lead to the development of new drugs to improve patient outcomes.