Elite swimmer Archie Goodburn started suffering from seizures in the build-up to the 2024 Olympics trials – where he missed out on qualification by a narrow margin. He went on to discover he had three large inoperable brain tumours. Since Archie's diagnosis he has become a passionate advocate for the brain tumour community, campaigning for more to be done to ensure patients like him have access to new, more effective treatments.
Here, Archie tells his story…
I had my first seizure after a training session in the pool in December 2023. I thought I’d had a stroke, but I was quickly discharged from A&E, being told it was most likely a migraine or epilepsy.
Over the next five months, the seizures became more common after training. It’s hard to put into words what the seizures felt like – it’s like a building of fear, a sense of foreboding and then a receding of consciousness. Those closest to me – my girlfriend and sister – could tell when I was having an episode, but sometimes the changes would be so subtle they were hard to explain. By May of 2024 I was having four to five seizures a week. I kept going back to the doctors but clearly wasn’t hitting the right ‘buzz words’ to describe my symptoms and trigger an MRI scan. I was told to keep a food diary, looking for patterns that just weren’t there.
It’s frustrating looking back that there wasn’t something in place at that very first A&E admission to help diagnose a tumour and I am hopeful about promising blood test research that could mean that others in future don’t endure months of uncertainty, anxiety and dismissal.
In the weeks before the try outs for the 2024 Olympics, I got ‘flickers’ outside of the pool and I knew I needed to be taken seriously. I bit the bullet and had a private consultation and paid for an MRI scan.
The call came through the next day. I missed it because I was in the pool and when I got back to my phone, I had a message from my mum as well saying that the doctors were trying to get hold of me. I knew it wouldn’t be good news if they were tracking me down like that.
I called the doctor back, sat on the bench where I had sat six days a week for years to put my shoes on, an everyday moment and location forever changed by the news I received. I was told I had a brain tumour. I had a contrast-MRI scan the next day so doctors could get the more granular detail they needed. In amongst the shock, part of me felt vindicated about my struggle to get the diagnosis.
I went to the consultation desperate to be told that my tumour was operable, that I could have surgery and get back to competing and studying for my degree in Engineering at the University of Edinburgh. But sadly it isn’t – my disease is incurable and I have multiple tumours spread across the brain that cannot be removed.
Reviews of the scans suggested I had oligodendroglioma and I underwent a biopsy for a cancer screening panel in the US, which confirmed it was grade 2, with signs of cancerous growth. I just couldn’t believe I had cancer, it made no sense. But I have since learnt that brain tumours are indiscriminate and that for many types, we just don’t know why some people get them.
I feverishly researched options and identified drugs that were being trialled and used abroad.
I knew what I wanted and had an action plan. But I was just told no, these weren’t options in the UK and that I had to ‘watch and wait’ as chemotherapy and radiotherapy would have too many devastating side effects. I walked away from that appointment in utter shock.
It’s hard to go to sleep when you know something is growing in your head and you’re doing nothing about it.
It’s terrifying. I was staying up late, putting off going to bed, reading scientific paper after paper just trying to find an option for me. Luckily due to my degree, I could choose to research brain cancer for my Masters so I could at least combine my studies with the enormous research task I had taken on around my own health.
I knew what my goals were for the next four years – I wanted to graduate and to swim at the Commonwealth Games after narrowly missing out on qualifying for the Olympics in 2024. And it was important to me that my oncologist knew about me and what I wanted to achieve as everyone is different and everyone’s tumour impacts them in different ways. I really recommend that patients ensure their doctors know about them as an individual so they can treat the person not just the scan. For me, radiotherapy and chemotherapy just weren’t an option based on how spread out my tumours were and the huge impact that approach would have had on my cognitive and physical health.
I couldn’t simply watch and wait.
I knew I needed to get on vorasidenib – a drug for IDH-mutant tumours such as oligodendroglioma which has been shown to slow tumour growth. After being dismissed by others, I found a clinician at the Marsden in London who got me treatment through the managed access programme – the only route to getting the drug in this country at the time. I started on the drug in summer 2025.
Vorasidenib has been transformational for me and I am proud of the role I have played in advocating for the community to support the approval of the drug by the Scottish Medicines Consortium (SMC) and the National Institute for Health and Care Excellence (NICE) this year. I graduated from the University of Edinburgh with a first, I made it to the 50m breaststroke final of the Commonwealth Games, I can enjoy amazing trips with loved ones and I will be starting a new job in the Autumn. I’ve been able to open my eyes to support beyond treatment, benefiting from art psychotherapy to give me the tools to process everything that is going on and I would urge other patients to look at these options as well beyond the medicines. Good days feel like you’re beating your tumour and making the most of what you have.
But being told you have incurable cancer and have 10 to 12 years to live is devastating. Being told you have incurable cancer and have 10 to 12 years to live and there’s nothing you can do about it is even more of a blow.
Bad days look like panic.
The overwhelming feeling that if vorasidenib fails then currently there is no ‘plan B’ or ‘next line’ of treatment in this country. Bad days feel like not being able to get to sleep because you might run out of options. I could deal with it better if I knew that across the world people stood the same chance, but that isn’t true – patients with my tumour type in the US have access to other drugs such as safusidenib and ivosidenib.
I have lost so many people so quickly to more aggressive forms of brain cancer and I know that I am comparatively lucky with my prognosis. But as a man in his 20s, how do I sit down and map out what that decade should look like? I feel a sense of hope that there will be a breakthrough in the time where I can still benefit, that I can move from treatment to treatment and stay one step ahead. But what if that hope isn’t fulfilled?
Advocacy is a form of treatment.
If I can play a part in changing the landscape of brain tumour treatments and research then hopefully these treatments will come along and sustain me and others.
I am hopeful for my meeting with the Prime Minister, the brain tumour community has united behind me and I know that this is a unique opportunity for change. I have spoken to so many people and every voice has a value no matter what someone’s prognosis – we all have the same message in different ways. We cannot except the status quo in the system, we cannot be risk-averse. People are dying.
My advocacy has opened doors to have conversations at the highest level of Government about the injustices faced by the brain tumour community and campaign for change for myself and for them. But I hope I can also inspire people on an individual level. Not everyone’s goals include chasing swimming titles, but I hope that I can give patients the courage to push for their own bit of happiness, whatever that looks like, while living with the enormous reality of this devastating disease. That’s what gets me out of bed in the morning.
Archie Goodburn
October 2026
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. Each year, nearly 13,000 people are diagnosed with a brain tumour and this disease kills more children and adults under the age of 40 than any other cancer. Yet just 1% of the national spend on cancer research was allocated to this devastating disease between 2002 and 2021.
Brain Tumour Research is determined to change this.
If you have been inspired by Archie’s story, you may like to make a donation or leave a gift in your will to help fund game-changing research.
Together we will find a cure.
