Every year more than 12,000 people in the UK are diagnosed with brain tumours. Sarah Scanlan, 48, an oncology dietitian from Manchester, was one of the first to benefit from a new treatment that comes with fewer side-effects, as she tells Adrian Monti…
The patient
While staying at my parents’ house in May last year, I got up in the night to fetch a glass of water and found I suddenly couldn’t breathe or speak.
I felt my eyes roll back in my head and I lost sensation down my right side before dropping to the kitchen floor, unconscious.
I don’t know how long I was out for but, when I came to, I went to bed without alerting my parents.
The following day I went to see my GP who referred me as a non-urgent case to hospital to test for epilepsy and told me not to drive for the time being.
I tried not to worry but a week later, in bed, I lost consciousness again.
This time, when I came round, I went straight to A&E and had various tests, including an MRI brain scan.
Within hours, I was told I had a brain tumour called a glioma.
On the plus side, it was benign; but it could mutate into a cancerous tumour, so needed removing.
Sarah Scanlan, 48, an oncology dietitian from Manchester, was one of the first to benefit from a new proton beam therapy treatment for her brain tumour that comes with fewer side-effects
The purpose of the clinical trial Sarah was invited to try was to see if proton particles were as effective at shrinking the tumour as radiotherapy, while being less harmful to the surrounding healthy brain tissue (file pic)
I was in shock — it felt as if I had a ticking time bomb inside my head.
I was put on daily tablets to stop the seizures (caused by pressure from the tumour) and referred for surgery to remove as much of the growth as possible.
I would be awake during the operation as the tumour — the size of a golf ball — was close to parts of the brain controlling speech, language and movement.
By being awake, the surgeons could speak to me to check these functions remained undamaged.
After a local anaesthetic, I had the surgery in a seated position with my head in a sort of clamp to keep it still.
It took seven hours and I was left with a 10-inch scar on my head. However, my neurosurgeon said they’d removed all but a sliver of tumour.
The biopsy confirmed it was an oligodendroglioma, a low-grade (i.e. slow-growing) tumour.
Further treatment with radiotherapy and chemotherapy was needed to control what was left of it.
But before that started, I was told I was suitable for a clinical trial at The Christie Hospital — where I work — comparing proton beam therapy to standard radiotherapy.
Proton beams are a type of radiotherapy but are more precise than the usual method.
The purpose of the trial was to see if proton particles were as effective at shrinking the tumour as radiotherapy, while being less harmful to the surrounding healthy brain tissue (especially to the areas involved in cognitive function and memory loss).
My first treatment was in March. I had a bespoke plastic mesh mask fitted to ensure the beams hit their target.
Treatment lasted about ten minutes and I had 30 proton beam sessions every weekday for six weeks.
They left me tired and nauseous and I lost a lot of hair, but my cognitive function and memory have both been fine so far. I also started chemotherapy last month.
I feel I’ve lost a year of my life so next year, when I turn 50, I’m planning holidays, including to Mexico.
I’m a keen runner and hope to run the Manchester Marathon for The Christie Charity and give something back.
I feel lucky to have been picked for this trial and want others to benefit too.
The specialist
Dr Gillian Whitfield is a consultant clinical oncologist at The Christie NHS Foundation Trust in Manchester.
There are more than 130 different types of primary brain tumours (i.e. tumours that start in the brain, rather than spread from elsewhere). In adults, a significant proportion are the group called gliomas.
Grade 1 and 2 gliomas are classed as non-cancerous; faster-growing grade 3 and 4 tumours are considered malignant.
For many, surgery is the first treatment, followed by radiotherapy, chemotherapy — or both.
The aim with surgery is to remove as much of the tumour as possible, safely.
But that isn’t possible for a tumour which has infiltrated vital parts of the brain — this could cause life-threatening injury — nor does it catch cells too small to be seen.
Radiotherapy aims to prevent both visible and invisible tumour tissue from re-growing.
Conventional radiotherapy uses beams of X-rays to destroy cancer cells. This used to be done by shining beams from three or four directions.
Now more modern machines mean we can target X-rays more accurately and vary the intensity.
And more refined radiotherapy planning software means there is less damage to healthy tissue during the treatment.
But even minor damage to healthy brain tissue from radiotherapy can mean long-term problems with memory and difficulty processing information.
With proton beam therapy, beams of particles called protons treat the tumour but, unlike X-rays, they don’t carry on travelling (through healthy tissue) after reaching their target; they instead come to a halt.
It’s hoped this will cause fewer long-term brain side-effects, but in order to find out, we are part of the APPROACH trial with Leeds University.
This trial involves 246 patients — Sarah was our first recruit. Half will receive conventional radiotherapy and half proton beam.
We are targeting patients with oligodendroglioma.
There are around 350 cases a year in the UK and, while not as aggressive as a grade 4 tumour, they can cause death as they interfere with vital functions in the brain.
We know patients with it usually respond well to treatment and the prognosis is good, with average survival in excess of 15 years; some patients live for 30 or 40 years and may die with it rather than of it.
But cognitive issues such as memory problems can develop years after radiation treatment. And roughly half of all patients are affected by them as a result of radiotherapy.
Yet all oligodendroglioma patients will need radiotherapy at some point as the benefits far outweigh the risks.
More refined radiotherapy planning software means there is less damage to healthy tissue during the treatment. But even minor damage to healthy brain tissue from radiotherapy can mean long-term problems with memory and difficulty processing information
Depending on the trial’s findings, patients with other brain tumours might also become eligible for proton beam treatment.
Those randomly selected will have a six-week course of 30 treatments if they have a grade 2 oligodendroglioma; those with a grade 3 will receive 33 treatments over six-and-a-half weeks.
Before starting radiotherapy, each patient will undergo neurocognitive tests, repeated a month after treatment and then annually for five years.
This trial is set to last five years and while we believe proton beam therapy is likely to cause fewer neurocognitive problems, it will hopefully tell us if that’s the case.
