Mum diagnosed with brain tumour warns others of symptoms of potentially lethal condition

A mum of two has spoken of the importance of recognising the warning signs that could indicate you have a brain tumour – after she was diagnosed with having one aged just 34.

Samantha Jose, from Bourne in Lincolnshire is championing The Brain Tumour Charity’s new ”Better Safe than Tumour” campaign which was launched this month. 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.

"Not once did I think that it would be a brain tumour.”

Samantha first began experiencing problems with her vision in her left eye towards the end of last year. She went to see her optician at Vision Express who amended her prescription accordingly.

However, when this didn’t make any difference, she returned for a field of vision test and eye scans. This found some issues with her peripheral vision and so her optician referred her to Spalding Hospital. The team there found that her optic nerve was damaged so she was sent to Boston Hospital for an MRI scan.

This scan found that Samantha had a brain tumour which was pushing on her optic nerve. Doctors told her that if it hadn’t been found then she would have gone blind because of it.

Samantha said: “I had absolutely no knowledge of brain tumours at the point of my own diagnosis – so hearing those words was really concerning. You never think that this kind of thing will happen to you – especially as I am young and healthy. In fact, I was angry that it had happened to me. Of course, I knew that something was wrong which was impacting on my vision but not once did I think that it would be a brain tumour.”

Samantha had surgery to remove the tumour which was then confirmed to be a low-grade meningioma. It wasn’t possible to remove all of the tumour during the surgery to the risk of causing further damage to Samantha’s vision so she will now have regular scans to monitor her condition.

Samantha was told that her vision would not return but she has learned to cope with the impact this has. She is also taking time off work whilst she is unable to drive and to allow her to recover alongside managing ongoing fatigue.

Samantha added: “There really does need to be more awareness of the signs and symptoms of brain tumours - I never would have thought that a problem with my eye sight could be because of a brain tumour. It’s not just headaches or even seizures which can be the warning signs. I would advise anyone who has any concerns to get checked out by a medical professional – it’s easy to get sidetracked when life is busy but I am so glad I made the time to push for the MRI which ultimately saved me from losing my vision.”

Possible warning signs

In adults, symptoms include persistent or severe headaches which may be worse in the morning, changes to vision including blurs and double vision, tiredness, nausea, speech difficulties and seizures in adults. In children, symptoms may also include balance, co-ordination or walking problems, loss of taste and smell, abnormal head position, regular sickness, especially in the morning and excessive thirst.

Thousands diagnosed with tumour every year

While the disease remains relatively rare overall, the number of people being diagnosed with a brain tumour, which is the UK’s leading cancer killer of children and adults under 40, rose from 6,577 in 2001 to 9,960 in 2019.

Over 12,000 people are diagnosed with a brain tumour in the UK each year, with almost 5,000 people losing their lives to the disease each year. While more people are now surviving cancer than ever before in the UK 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 adults survive for five years after a brain tumour diagnosis, with the disease continuing to reduce life expectancy by 27 years on average – the highest of any cancer.

"These worrying figures show how urgently we need to act on this”

Dr David Jenkinson, Chief Scientific Officer at The Brain Tumour Charity, which funds world-class research and provides trusted support for anyone affected by the disease, said: “We’re really grateful to Samantha for supporting The Brain Tumour Charity’s ‘Better Safe Than Tumour’ campaign by sharing their story to highlight just why we need to raise more awareness of the disease. These worrying figures show how urgently we need to act on this. 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.

“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. Anyone concerned can also speak to us on 0808 800 0004 or find out more about the possible signs and symptoms at headsmart.org.uk. We’re here for you.”