Lauren from Peterborough believed her facial numbness was linked to the eating disorder (ED), anorexia, but the symptoms persisted when she overcame her ED. In December 2023, an MRI for a suspected trapped nerve revealed a shocking diagnosis of a grade 2 astrocytoma. Months after surgery, the 23-year-old defied the odds to graduate with a master's degree. Now, Lauren is using TikTok to raise awareness of the disease and call for greater investment in research.
Lauren tells her story…
It’s hard to know if I had symptoms for a length of time before my diagnosis. In 2020 I developed anorexia and two years into living with my eating disorder, I developed a numb sensation in my face and at the back of my head.
I was receiving support for my eating disorder and mentioned the numbness to my doctor who said it’s not something they had ever come across. I thought it was a sign of needing to eat something, in relation to maybe low blood pressure and low heart rate.
In 2023 I overcame my anorexia, but the numbness persisted, although not constant, it came every two weeks.
At the time I was living alone in London and was on a call with my mum who lives is Peterborough, she encouraged me to go to the GP which is where I went the next day. They told me it could be a trapped nerve around my jaw or something neurological and I was referred for an MRI scan in February 2023 at InHealth Diagnostic Centre in Ealing, West London.
A few days later I opened the NHS app notification on my phone; it was the results of my scan and saw the words ‘left frontal lobe lesion’. I knew from my degree in psychology when I studied a little about the brain, the word lesion wasn’t good. I scrolled to the bottom of the page and read ‘referred to oncology’.
“I was terrified, in a panic, all I could think is that I was going to die next week.”
I phoned my parents with the news and broke down.
The next morning, I was in tears at a GP appointment. I kept asking, am I going to live? Does this mean I will die in a few months’ time? My questions were met with little to no reassurance, only an appointment at St Bartholomew's Hospital (St Barts) in East London, which came in December, two months after my initial scan. In The meantime, I left London and moved home with my parents.
The diagnosis took its toll on my mental health, I went on anti-depressants whilst continuing to study for my year-long masters (MSc) eating disorders and clinical nutrition degree at University College London (UCL), online. I struggled to concentrate and experienced brain fog which, looking back now I wonder if they were symptoms of my brain tumour.
“I was close to dropping out of uni and not completing the course.”
My parents talked me round, reminding me how far I had come and we didn’t yet know what we were dealing with. They persuaded me to persevere for fear I’d regret my decision should my diagnosis turn out to be nothing.
I was so scared that I was going to have seizure (after the doctor warned me this could happen), when it came to my exams, Dad travelled with me to London and waited outside the room.
At the end April 2023, I had an MRI with contrast and results came the next month. The consultant greeted me telling me the good news that my tumour looked like a grade 1 DNET and I next needed to see them in six months. They told me I would likely be under care for 10 years and then be discharged. It was the reassurance I had longed for.
My mindset switched. I moved back to Whitechapel in London and lived my best life; I finished with my studies and found a job as health and wellbeing coach; slipping back into my social life I felt relieved.
Results of my six-monthly check-up came in December 2023. I went to the appointment full of hope, expecting to leave with another check-up for six months’ time but my hope was soon shattered. There was a chemical change picked up on my most recent scan and the best course of action was to operate.
I spent Christmas with the operation date looming over me. I looked online about what to expect and was ready for surgery by the time January came round.
On 24 January 2024 I had a craniotomy at The Royal London Hospital in Whitechapel which lasted almost six hours. Within two weeks I felt back to my usual self. Fully functioning with no side effects of surgery.
Results of a biopsy confirmed the mass was a grade 2 astrocytoma, cancerous but ‘nothing to worry about’. I had hoped it was a less scary tumour as I understand that mine can grow again.
During a three-month check-up in April, the scan image showed something is still there that shouldn’t be.
The consultant wants to avoid radiotherapy due to my young age.
She told me it wasn’t new growth but could be residual tumour. I’ve another scan at the very beginning of June to determine if I need a second operation which this time, I will be awake for due to the tumour growing close to the motor strip in my brain.
I’m frustrated and surprised at the lack of investment funding that goes into brain tumour research and I’m using my TikTok account to raise awareness of this as I await for my next scan and the result.
I read countless research papers and became fascinated by the grading of tumours and how there are so many variants that differ from person to person.
There is no one set of symptoms or one size fits all when it comes to treatment. If we are to discover kinder treatment options and find a cure for this disease, we need greater investment into research.
Three months post-op, at the beginning of May I set out to take part in the charity’s 200K in May Your Way Challenge. It was the first thing I could do after recovering from surgery. I started off by covering some of the distance by foot and got a bike part way through the month to help me cover more kilometres, mainly on my own but my dad joined me on some bike rides.
The only concern I have as I wait for a decision to be made about a second operation, is if and how that may change me due to how invasive brain surgery is.
Lauren Boon
June 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Lauren’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure