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“I should have seen my GP earlier but I knew nothing about brain tumours.”

Jade Mcmaster, 31, was diagnosed with a brain tumour after having a seizure whilst she was on a petrol station forecourt.

In October 2017, she was returning an online shopping order when she had a full tonic-clonic seizure. Passers-by who called an ambulance said that she returned to the car and, instead of getting inside, started drawing circles on the car window with her finger before collapsing on the ground.

A series of seizures followed and lasted for around 55 minutes so Jade was sedated in the ambulance and then put in an induced coma. A MRI scan found a lesion on Jade’s brain and, after more scans and cognitive tests, a brain tumour was found on her left temporal lobe.

Jade said: “I knew absolutely nothing about brain tumours ahead of my own diagnosis. If I had then I would have been more informed about what it all meant and I would have requested a scan. Maybe then the way in which my brain tumour was discovered would have been less dramatic too – I could have so easily had that seizure when driving which is a scary thought. Since my diagnosis, I have learnt a lot about the disease – importantly, how a diagnosis isn’t necessarily fatal as there’s so many different types of brain tumours which affect people in many different ways.

Prior to the seizure, Jade had a history of migraines, which would often make her feel sick and averse to light. She didn’t visit her GP about it and, at the time, she put it down to her busy lifestyle. Doctors think that the tumour may have been growing for a significant amount of time and creating these symptoms to the point where a build-up of pressure triggered the first seizure.

Jade had surgery to remove the tumour, which was confirmed to be a grade 2 oligodendroglioma, and she was also diagnosed with secondary epilepsy. Over the years which followed, Jade had more seizures, so she was prescribed anti-seizure medication. In July last year, a regular scan found that the tumour had grown. Surgery wasn’t possible due to the risk of causing cognitive damage so Jade had radiotherapy followed by chemotherapy, which is currently underway.

Jade said: “I should have seen my GP sooner – I know that. That’s why I would encourage anyone with any concerning symptoms, or a combination of symptoms, to see their doctor as soon as possible. I thought that I just had headaches until I experienced what it could lead to. Every day, people brush things like headaches or problems with their vision aside and just put them down to the stresses of our modern lives. We take a painkiller and get on with the rest of our day. But people need to be aware when this could be a sign of something bigger, even if the chances are small.

“Raising more awareness through the ‘Better Safe Than Tumour’ campaign is exactly what is needed to encourage people to get checked out by the GP. The Brain Tumour Charity is doing some amazing work to help people affected by the disease in some way and I am proud to be sharing my story in order to try and do so.”

It is hoped that The Brain Tumour Charity’s Better Safe Than Tumour campaign alongside pioneering research in Scotland to develop new triage tools for GPs – such as a quick brain tumour language test to name as many animals as possible in 60 seconds, and the Dxcover brain tumour blood test – could in future help ensure more people are diagnosed at the earliest opportunity.

Over 12,000 people are diagnosed with a brain tumour in the UK each year, with almost 5,000 people still losing their lives to the disease each year5. There are over 130 different types of brain tumour, as classified by the World Health Organisation.

While more people are now surviving cancer than ever before in Scotland thanks to NHS investment, research progress and increased charity support funded by the public, progress for brain tumours has continued to lag behind survival improvements seen in other diseases. Just 12% of UK adults survive for five years after a brain tumour diagnosis7, with the disease continuing to reduce life expectancy by 27 years on average8 — the highest of any cancer.

In new analysis of cancer incidence data collected on brain tumours by Public Health Scotland, the average number of brain tumour cases was found to have increased steadily from 822 cases in 2000-2002 to 1,069 in 2017-2019 — an increase of 30%.

The analysis included all primary malignant and non-malignant tumours of the brain and central nervous system, including the meninges, brain, spinal cord, cranial nerves, pituitary gland, craniopharyngeal duct and pineal gland.

The highest number of cases recorded in an individual year during this period was in 2017, where there were 1,142 brain tumours diagnosed.

The analysis by The Brain Tumour Charity also found that there were around 75 fewer brain tumours diagnosed in Scotland in 2020 compared to 2019 following the impact of the COVID-19 pandemic – a decrease of nearly 8%.

While reassuring the public that brain tumours remain relatively rare, The Brain Tumour Charity is calling for for greater awareness of the potential signs and symptoms of the disease as it launches its “Better Safe Than Tumour” campaign.

The campaign aims to support the public – whether adults, children, parents, partners or friends – to be aware of the possible signs and symptoms and to get any concerning or persistent symptoms checked out by a doctor.

Better Safe than Tumour builds on the success of The Charity’s prior initiative in paediatric brain tumours, HeadSmart, which launched in 2009 in partnership with the Royal College of Paediatric and Child Health and the University of Nottingham, to raise awareness of the signs and symptoms in children and teenagers.

Following HeadSmart’s impact in helping reduce average diagnosis times in younger people from 13 to 6.5 weeks9, the award-winning campaign has now been refreshed and expanded to cover the signs and symptoms in both children and adults.

Dr David Jenkinson, Chief Scientific Officer at The Brain Tumour Charity said: “We’re grateful to Jade for sharing her story to support the campaign. These worrying figures show just how urgently we need to act on this devastating and life-changing disease in Scotland. While brain tumours remain relatively rare, incidence has continued to rise significantly over the last two decades, and this has unfortunately not yet been matched by the tangible progress in diagnosis, treatment and survival outcomes seen in many other cancers.

“With around 1,000 people now being diagnosed every year in Scotland, and the impacts on diagnosis seen due to the pandemic, renewed action to support more people to recognise the signs and come forward to see an NHS doctor has never been more needed.

“We absolutely want to reassure people, that despite this increase in cases, brain tumours are still uncommon. But it’s so important that we see greater awareness of the signs and symptoms of the disease to ensure anyone affected can get the diagnosis, treatment and support they need at the earliest opportunity.

“The warning signs vary by age group, as well as due to the type of tumour and where in the brain it is located. We’d encourage anyone who is worried about a symptom that’s unusual for them, and particularly if it is persistent or they experience a combination of symptoms, to speak to their doctor – to help rule a brain tumour out.”

For more information visit HeadSmart here.