Man whose brain tumour went undetected for eight years – even after doctor checks – reveals the key warning signs YOU need to know

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Written By Rivera Claudia

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  • Matt Carpenter revealed the red flags he missed across eight years he had one
  • ‘It’s safe to say I can probably tell you a few of the signs and symptoms,’ he said 

A man who had a brain tumour go undetected for eight years has revealed the key warning signs to look out for based on his experience.

Matt Carpenter, author of A Trip Down the Rabbit Hole: My 10 Year Journey with a Brain Tumour, mentioned multiple red flags which should have prompted him to go back to doctors in the years after his tumour was missed in a CT scan in 2010.

In January 2018, Mr Carpenter was finally told he had a low-grade glioma brain growth – the size of a Cadbury’s Creme Egg – that would need urgent surgery.

Looking back, he acknowledged that he was overly willing to attribute his symptoms to things like high stress and overworking, although he did not experience a couple of the most commonly known symptoms.

‘It’s safe to say I can probably tell you a few of the signs and symptoms of a brain tumour,’ he said in a TikTok. 

Matt Carpenter (pictured) mentioned multiple red flags which should have prompted him to go back to doctors after his brain tumour was initially missed in a CT scan in 2010

Mr Carpenter showed the scans of his brain in 2010 (above), when the tumour was missed, and in 2018 when he was finally diagnosed

Despite his tumour growing to the size of a Cadbury Creme Egg, he did not experience some of the more common signs

Mr Carpenter showed the scans of his brain in 2010 (left), when the tumour was missed, and in 2018 (right) when he was finally diagnosed

Bizarrely, Mr Carpenter began by revealing: ‘In the eight years my brain tumour was left unnoticed – obviously getting bigger and bigger and bigger – I never once had a headache, not even with a hangover.’

Headaches top the NHS’ list of brain tumour symptoms, which makes it more understandable that Mr Carpenter was reluctant to get checked despite some of his other symptoms.

NHS brain tumour symptoms 

Brain tumours can affect people of any age, including children, although they tend to be more common in older adults.

More than 12,000 people are diagnosed with a primary brain tumour in the UK each year, of which about half are cancerous. Many others are diagnosed with a secondary brain tumour.

The symptoms of a brain tumour vary depending on the exact part of the brain affected, but common symptoms include:

  • Headaches
  • Seizures (fits)
  • Persistently feeling sick (nausea), being sick (vomiting) and drowsiness
  • Mental or behavioural changes, such as memory problems or changes in personality
  • Progressive weakness or paralysis on one side of the body
  • Vision or speech problems

Sometimes you may not have any symptoms to begin with, or they may develop very slowly over time.

See a GP if you have these types of symptoms, particularly if you have a headache that feels different from the type of headache you usually get, or if headaches are getting worse.

If the GP cannot identify a more likely cause of your symptoms, they may refer you to a doctor who specialises in the brain and nervous system (neurologist) for further assessment and tests, such as a brain scan.

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He added that blurred vision was another symptom he never experienced.

But the two-time brain tumour survivor added that it still took two or three years for him to experience any symptoms at all after the missed opportunity in 2010.

‘My brain tumour didn’t really give me any symptoms that I could notice until 2012-2013,’ he explained, ‘and that was in the way of my speech going funny.

‘Every now and again I would slur my words – when I’m sober – I would forget how to say certain words or would forget what I’m saying mid sentence.’

Like issues with vision, issues with speech is a relatively common sign of a brain tumour, but Mr Carpenter said that he would just brush over it thinking ‘I need to see a speech therapist’.

It was another few years before he had his next red flag – a change in mental health and emotionality.

‘My emotional responses and mental health went quite skewwhiff,’ he said.

But this could also be otherwise explained, in his mind, by working in a ‘high pressure environment’ with the Hull Homeless Community Project doing ’70 – 80 hours a week’.

‘The biggest red flag,’ according to Mr Carpenter, ‘that should have been picked up – even by me – didn’t start until 2017, so nearly a year before diagnosis.

‘The first instance happened to be when I was on my way to America.’

He explained that on the flight he was sat next to an Irish couple before he fell asleep.

When he woke up he describes ‘making some bizarre noise, drooling, but not being able to move and struggling to breathe’.

He added: ‘I looked at the Irish couple and the faces just said it all. They looked terrified.’

The episode was dismissed as a bad dream at the time but Mr Carpenter continued to endure similar experiences for the months until his diagnosis in the new year.  

‘Turns out it wasn’t sleep paralysis like I kept telling myself. I was having violent seizures, but those seizures would only be triggered if I was fatigued or stressed, so I had quite a lot of them.

‘But again, I kept making excuses.’

The final straw was when one of these seizures came on in a work meeting, causing him to feel like he was having a stroke, after which Mr Carpenter was finally diagnosed after seeing medical professionals.

Despite his tumour initially being missed he clarified: ‘Best piece of advice I can give to anybody that’s worried about their body: If something feels off, just speak to your doctor.

‘We’ve got the NHS – use it. If you think something’s not quite right, ask. I should have asked a lot earlier than I did, and look where it got me.’ 

After being diagnosed in January 2018, his tumour was removed two months later, bringing a whole new ordeal as he had to be awake while under the knife.

He said that year: ‘The part of my brain that the tumour was on controls the movement of the left side of my body so after the operation, I couldn’t really move that side.

‘In the first couple of days I thought it would be a permanent thing.

‘It has been quite a stressful time. I walked in thinking it was going to be nothing that I was having brain surgery but I was quite naïve about it.’

After being diagnosed in January 2018, his tumour was removed two months later, bringing a whole new ordeal as he had to be awake while under the knife

After being diagnosed in January 2018, his tumour was removed two months later, bringing a whole new ordeal as he had to be awake while under the knife

In a separate video, Mr Carpenter revealed that recovery in hospital took about a week after his operation, during which he was being told that he would not be able to return to work in the near future.

However, he boasted that he was able to return to work – full-time night shifts in a homeless hostel – three months later.

On top of that, another month later he completed Tough Mudder – an endurance event which consists of a 10-12 mile (16-19km) obstacle course – twice, on consecutive days.

‘It was a major f*** you to my brain tumour,’ Mr Carpenter said. 

However, he ended up needing a second brain tumour dealt with – this time by radiation and chemotherapy. 

He explained that as a result of all that he has been through, on top of scoliosis and diabetes: ‘I’m signed off sick so technically I don’t have to look for work, but I’m bored, I want to do something with my life.’

And on top of working, Mr Carpenter is continuing his physical pursuits with an eight-day trek up Mount Kilimanjaro – Africa’s tallest mountain – for charity.

He is aiming to complete the mission in April and has set up a GoFundMe in support of MacMillan, The Brain Tumour Charity and P.A.U.L For Brain Recovery.

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