Former professional rugby player Tom, from South London, was diagnosed with a grade 4 astrocytoma in March 2025. He was just 31. His diagnosis came after a seizure two weeks after returning from his honeymoon with ex-England rugby player wife Vicky. After completing NHS standard of care treatment, he is now taking part in a clinical trial to prolong his life. As Ambassadors to Brain Tumour Research, Tom and Vicky are supporting the Charity's work, highlighting the inequalities patients face and calling for better, more personalised treatments so others don’t have to fight for the care they need.
Tom tells his story…
It’s hard to know if there were any signs of my brain tumour before my first seizure in March this year. Looking back, compared to what I am now, I think I was often in an unshakable bad mood. I regularly felt tired mentally and worried about things. Now, if someone’s late I don’t mind, and I don’t sweat the small things in life. Whether that’s because of the physical brain tumour or a new perspective I have on my life because of my diagnosis, I’m not sure.
What was meant to be the start of married life with Vicky, who I’d already been with for over a decade, soon turned into something out of a nightmare.
I don’t remember what happened when I had the seizure at home.
It happened on 16 March, two weeks after Vicky and I returned from our honeymoon in Sri Lanka.
All I remember is waking up on the floor, dazed and confused with paramedics around me. Vicky told me what happened. We were both napping on the sofa and our dog started barking which woke Vicky. Five seconds later my body went into seizure which lasted around seven minutes, and I stopped breathing. Vicky had to perform CPR, which must’ve been terrifying for her.
When the ambulance crew arrived, they thought I had a stroke. They took me to University Hospital Lewisham where a CT scan confirmed there was a tumour on my brain. I felt a little worried about what that meant and went into practical mode. They thought it was a grade 2 glioma and I was booked in for surgery for a few weeks’ time.
Having some idea of what we were dealing with, I was lucky to be working for an organisation where I would access private healthcare which I used to have further investigation.
An MRI revealed the tumour was the length and size of a toilet roll tube which I thought sounded pretty big.
The consultant told me I’d probably had it since I was a child and gradually it had mutated. In some ways it was reassuring because I’d gone 31 years without any side effects.
On 15 April I had an operation which saw full removal of the tumour. A few weeks later, at Cleveland Clinic in South West London the pathology results come through confirming the tumour was a grade 4 astrocytoma.
To me, all I heard and had heard so far was numbers. I knew hearing four was worse than two.
During the appointment I asked what could have caused the tumour to develop, and what could happen in different treatment scenarios, but I was met with what seemed like stock answers from the medical team. It was frustrating that the doctors didn’t have the answers, but I’ve come to understand that’s because they don’t have the knowledge because there’s been a lack of spending in research into brain tumours. It all has a knock-on effect.
My prognosis is five years, which, when you’re 31, fit and healthy and newly married, isn’t what you expect to hear.
Four weeks after surgery, I had combined radiotherapy and chemotherapy treatment at the Royal Marsden Hospital in Chelsea I felt a bit tired but maintained my exercise and continued to coach rugby at Old Colfeians RFC. MRI scans during this time were stable and showed no tumour growth.
At the beginning of August, after radio and chemo, I took part in 24-hour WOD, 24 work outs on the hour every hour at CrossFit in Sydenham where Vicky and I are members. We raised more than £40,000 for two charities including Brain Tumour Research. I managed 15 of the workouts, Vicky did all 24. The support from others was incredible and very uplifting when you’d been awake for hours.
Throughout my diagnosis, Vicky has been doing a lot of research, trying to find answers and treatment options. On speaking to a family member who works in cancer research in Canada, she found out about a clinical trial available in the UK for patients with an astrocytoma - IDH mutant, the type I have.
We presented this information to my oncologist who agreed this would be a good option. The trial, which is in Phase 2, is called IRIS. It uses vorasidenib alongside temozolomide (TMZ) to understand the recommended combination dose of vorasidenib. There was a short window between finishing the NHS standard of care for brain tumour patients, and this specific trial involves taking two tablets, daily. So far, it’s going okay. I feel quite sick but that’s a known side effect of the medication.
I’ll be monitored regularly to check if it is working as expected. I’m pleased I could start it this month, I want to do everything I can to beat this disease and live as close to a normal life as possible.
I’m already considering options if this trial treatment doesn’t work, but doctors aren’t always forthcoming. It’s not about gatekeeping – there simply isn’t enough evidence for some innovative treatments, still in trial phases, to be made widely available.
The problem is, brain tumour patients often don’t have the luxury of time, which is why investment in research needs to happen now.
At the moment, it feels like a one-size-fits-all approach, but patients aren’t all starting from the same point. I refuse to be defined by an average.
Brain tumours are indiscriminate; they can affect anyone at any age. I’ve been surprised to learn at how many young people it impacts. Brain tumours continue to kill more children and adults under the age of 40 than any other cancer. No cancer diagnosis is a good one, but I don’t know what I could’ve done to avoid it, and that feels unfair.
But with Vicky by my side, as Ambassadors to Brain Tumour Research, we will continue to fight, to raise awareness of this disease as well as money to fund research, and hope that treatment for brain tumour patients continues to evolve.
Tom Chapman
August 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, 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 Tom’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.
