More than 12,000 people in Britain are diagnosed with a brain tumor every year. Sarah Scanlan, 48, an oncology dietitian from Manchester, was one of the first to benefit from a new treatment with fewer side effects, she tells Adrian Monti…
The patient
When I was staying with my parents last May, I got up in the night to get a glass of water and suddenly found myself unable to breathe or talk.
I felt my eyes roll back in my head and I lost feeling down my right side before I fell unconscious to the kitchen floor.
I don’t know how long I was gone, but when I came to, I went to bed without alerting my parents.
The next day I went to my GP, who referred me to the hospital as a non-urgent case to be tested for epilepsy and told me that I was not allowed 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 over, I went straight to the emergency room and underwent several tests, including an MRI brain scan.
Within hours I was told I had a brain tumor called a glioma.
On the plus side it was benign; but it could mutate into a cancerous tumor, so it had to be removed.
Sarah Scanlan, 48, an oncology dietitian from Manchester, was among the first to benefit from a new proton beam therapy treatment for her brain tumor that has fewer side effects
The purpose of the clinical trial Sarah was invited to was to see if proton particles were as effective at shrinking the tumor as radiotherapy, while being less damaging to surrounding healthy brain tissue (file photo)
I was in shock; it felt like I had a ticking time bomb in my head.
I was given daily tablets to stop the attacks (caused by the pressure of the tumor) and was referred for surgery to remove as much of the growth as possible.
I would be awake during the operation because the tumor – the size of a golf ball – was close to parts of the brain that control speech, language and movement.
Being awake allowed the surgeons to talk to me to make sure these functions remained undamaged.
After a local anesthetic, I was operated on while sitting with my head in a kind 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 had removed all but a piece of the tumor.
The biopsy confirmed that it was an oligodendroglioma, a low-grade (that is, slow-growing) tumor.
Further treatment with radiotherapy and chemotherapy was needed to control what was left.
But before that started, I was told I was suitable for a clinical trial at Christie Hospital – where I work – comparing proton beam therapy with standard radiotherapy.
Proton beams are a form of radiotherapy, but are more accurate than the usual method.
The aim of the trial was to see whether proton particles were as effective at shrinking the tumor as radiotherapy, while being less damaging to surrounding healthy brain tissue (particularly to the areas involved in cognitive functioning and memory loss).
My first treatment was in March. I had a custom plastic mesh mask applied to ensure the rays hit their target.
The treatment took about ten minutes and I had thirty proton beam sessions every weekday for six weeks.
They made me tired and nauseous and I lost a lot of hair, but my cognitive function and memory are fine so far. I also started chemotherapy last month.
I feel like I’ve lost a year of my life, so next year, when I turn 50, I’m planning vacations, including to Mexico.
I am a keen runner and hope to run the Manchester Marathon for The Christie Charity and give something back.
I feel fortunate to have been chosen for this trial and want others to benefit from it 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 tumors (that is, tumors that start in the brain and do not spread from elsewhere). In adults, a significant proportion belong to the group called gliomas.
Grade 1 and 2 gliomas are classified as non-cancerous; faster growing grade 3 and 4 tumors are considered malignant.
For many, surgery is the first treatment, followed by radiotherapy, chemotherapy – or both.
The goal of surgery is to safely remove as much of the tumor as possible.
But that’s not possible for a tumor that has infiltrated vital parts of the brain — which could cause life-threatening injuries — nor captures cells too small to be seen.
The aim of radiotherapy is to prevent both visible and invisible tumor tissue from growing again.
Conventional radiotherapy uses X-rays to destroy cancer cells. Previously, this was done by shining rays from three or four directions.
More modern machines allow us to focus X-rays more precisely and vary their intensity.
And thanks to more sophisticated radiotherapy planning software, there is less damage to healthy tissue during treatment.
But even minor damage to healthy brain tissue from radiotherapy can mean long-term problems with memory and information processing.
In proton beam therapy, particulate matter called protons treat the tumor, but unlike X-rays, they do not travel further (through healthy tissue) after reaching their target; instead, they come to a standstill.
It is hoped that this will cause fewer side effects on the brain in the long term, but to find out we are part of the APPROACH trial with the University of Leeds.
This trial involves 246 patients; Sarah was our first recruit. Half receive conventional radiotherapy and half proton beam.
We focus on patients with oligodendroglioma.
There are around 350 cases a year in Britain and although they are not as aggressive as a grade 4 tumour, they can cause death because they disrupt vital functions in the brain.
We know that patients with it usually respond well to treatment and that the prognosis is good, with an average survival of more than 15 years; some patients live 30 or 40 years and may die with it instead of from it.
But cognitive problems such as memory problems can develop years after radiation treatment. And about half of all patients suffer from it as a result of radiotherapy.
Still, all oligodendroglioma patients will need radiation therapy at some point because the benefits far outweigh the risks.
Thanks to more sophisticated radiotherapy planning software, there is less damage to healthy tissue during treatment. But even minor damage to healthy brain tissue from radiotherapy can mean long-term problems with memory and information processing
Depending on the findings of the study, patients with other brain tumors may also be candidates for treatment with proton beams.
Those selected at random will receive a six-week course of 30 treatments if they have grade 2 oligodendroglioma; those with grade 3 receive 33 treatments over six and a half weeks.
Before starting radiotherapy, each patient undergoes neurocognitive testing, repeated one month after treatment and then annually for five years.
This trial will last five years and while we think proton beam therapy is likely to cause fewer neurocognitive problems, it will hopefully tell us if that is the case.
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This week: ‘Internal’ shower against bloating
What social media says: Some TikTokkers are raving about the benefits of the “internal douche,” a daily drink that they claim relieves constipation and bloating..
When ‘showering’, two tablespoons of chia seeds and the juice of one lemon are added to a glass of water, left to stand for ten minutes and then swallowed.
The expert’s opinion: ‘Bloating is nothing but wind, and this is often caused by an imbalance in gut microbiota (gut microbes) related to a lack of fiber,’ says dietitian Dr Carrie Ruxton.
‘I wouldn’t recommend this drink as a daily bloating remedy because although it contains around 8-10 grams of fibre, this can lead to cramps, flatulence and diarrhea all at once.
‘Instead, slowly build up your fiber intake to the recommended 30 grams per day with wholemeal bread, cereal, pasta and rice.
‘Aim for five servings of fruit and vegetables; increase your intake of beans and legumes; save the skins of potatoes – and snack on nuts and seeds.
“Drink plenty of fluids to help move the fiber through the system.”