Lee Masters

4 min read

Shortly after Lee from Torquay celebrated his 30th birthday in 2017, he began to experience visual auras and lost his sense of direction. He was prescribed migraine medication by his GP. Months later in January 2018 his symptoms recurred, this time weekly. He suffered two seizures within months of each other and in June 2018 an MRI scan confirmed he had an inoperable low-grade astrocytoma. Now 36, Lee has undergone radiotherapy and two years of chemotherapy. His tumour is now classified as grade 3. He’s sharing his story to highlight the need for more funding into research to help find a cure. 

Lee tells his story… 

The first time I experienced something unusual with my health was when I woke up at home after a weekend at Bestival in Dorset. I was celebrating my 30th birthday in 2017. I had visual auras – a flashing light on the left hand side of vision - which I had never had before and I felt confused, my sense of direction was all off. 

This continued for a few days and I had to rely on sat nav on my phone to get to places I went to regularly. I’d been with my girlfriend, Helen, about six months at the time and had to use sat nav to get to her house. I knew where I wanted to go, I just couldn’t remember how to get there. 

“I went to the GP who prescribed beta blockers for visual migraines. After five days my symptoms cleared and I was OK for the next four months.” 

In January 2018 the visual auras returned, this time more frequent, about twice a week and they’d last a couple of minutes each time. Again the GP said it was likely to be related to visual migraines and nothing more happened until March 2018 when I had my first full seizure. 

I was having intense visual aura, this time whilst working on site – I started a construction business with my best friend and business partner Marus Ward in 2013, at the time I was on the tools. I took myself to the van to sit down and phoned Helen, explaining to her that I didn’t feel right and everything felt worse this time round. 

“That’s when I passed out whilst on the phone. Helen could hear me fitting before the call cut out.” 

She managed to phone a colleague who found me in the back of the van, confused and looking through my tools. I went to Torbay Hospital and had blood tests and an ECG, confirming I’d had a seizure. I had more tests, this time with the neurology team and was discharged pending further investigation should it happen again. 

Two months later, in May I had my second seizure, this time whilst on holiday in Malta. I was in bed next to Helen when it happened, this time she was forced to watch as my body fitted for almost two minutes. When I came round I was confused and I told my neurologist as soon as I got home. 

Whilst waiting for an MRI scan I was put on anti-seizure medication, which I am still on today. 

In June I was given the devastating results of the MRI and I was diagnosed with an astrocytoma, thought to be low-grade. I had a biopsy which confirmed it was a grade 2 and was placed on a watch and wait. 

A routine MRI showed the tumour had grown and I had 12 months of PCV chemotherapy which I understand is a common treatment offered to brain tumour patients. That finished in March 2020, just before the world went into lockdown and like other vulnerable patients, I was advised to stay at home due to a weakened immune system. 

Unfortunately, the tumour continued to grow and I had another biopsy in November 2020 which reclassified my tumour as a grade 3, still inoperable due to its location. 

However, there was a period of conflicting opinions with two different surgeons at Derriford Hospital as to whether this was still the case. I contacted the Royal Marsden for a third opinion and decided that the risk to reward wasn’t worth the operation, and moved forward with radiotherapy and more chemo. 

The radiotherapy caused me to lose some of my hair which was upsetting. I went to the barber to try and make something of my ‘new style’ so had a phase of wearing my hair looking like an extra from Peaky Blinders. 

I finished my radiotherapy in July 2021. Five weeks later I began chemo which finished in August 2022. Since then, routine scans have all been positive and my next one is due in early October. 

Over the years I have researched other treatments and have made changes to my lifestyle and diet. I eat mostly a keto diet now and occasionally fast which I read about in the leaflets you are given as a brain tumour patient. 

I understand that there have been advances overseas but it seems outrageous that as well as living with this disease, patients are often self-funding and looking at alternative treatments themselves. 

That’s why I want to support Brain Tumour Research. It isn’t just about me. There are tens of thousands of people diagnosed with a brain tumour each year and there is no one size fits all when it comes to treating the disease. 

My family, friends and colleagues have been a huge support to me along the way. I feel lucky that I can still work and I am now working as an estimator in the business. 

I still perform with my band called ‘The Kidneys Thieves’ (I had a kidney removed when I was younger). This year I took part in my third Walk of Hope to support Brain Tumour Research, organised by my sister, Paula. She’s been the driving force behind our £5,000 fundraising total so far. It’s something we will continue to do each year. For as long as I can, I will continue to help other people like me. 

Lee Masters
October 2023

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 Lee’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 

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