In a dedicated bid to stop others from going through the same plight, Natasha 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.
In adults, this includes 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.
Natasha had some of the common symptoms of a brain tumour in young people including delayed puberty and significantly limited growth which meant she was 4ft tall and weighed just four stone when she was 15-years-old.
Following several GP visits, it was only after Natasha fell in her back garden at home that an A&E nurse referred her to an endocrinologist. Blood tests confirmed a hormone imbalance and an MRI scan showed a thickening of Natasha’s pituitary stalk. She was originally diagnosed with Langerhans’ cell histiocytosis (LCH), a condition which affects the pituitary gland, as well as diabetes insipidus.
But several years later, when scans showed growth and Natasha was having headaches and eye pain, she was diagnosed with a germ cell tumour. This is typically fast-growing tumour often located near the pituitary gland, which causes headaches and sickness.
Natasha said: “The headaches were so painful and made me feel sick. I had no energy so I couldn’t go out – I stayed in bed all day and even walking to the bathroom was too much effort.
“We knew nothing about brain tumours back then, but it’s still shocking that it took 15 years to get an accurate diagnosis when, as I now know, the symptoms I had were common ones for brain tumours in young people. But my family and I are also very happy that we finally have the right information and now we know that this is just something that I will have to live with for the rest of my life.
“Whether you’re an adult or a child, knowing that you don’t feel right is very scary. This is especially so when there isn’t enough awareness about brain tumours amongst both medical professionals and people like me. We all know so much about other cancer types but not this one and that needs to change. I would have been able to get help more quickly if I had known what was happening to me.”
“More accurate information about the warning signs of brain tumours, which this campaign provides, can only help with this. It will make everything so much easier for people like me who are affected by the disease as well as their families and loved ones.”
It is hoped that The Brain Tumour Charity’s campaign will help more people to recognise the symptoms and encourage them to visit their GP to rule out brain tumour. It also aims to help ensure that people who do have a brain tumour can be diagnosed and receive the care and support they need as soon as possible.
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 Natasha 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.
“With over 12,000 people now being diagnosed every year in the UK, 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.”
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.
Natasha added: “I think The Brain Tumour Charity is doing fantastic work. I feel that there should be more research into rare and complicated tumour types and associated conditions, such as the diabetes insipidus I live with. So many of the healthcare professionals I have been in contact with don’t have much knowledge about germ cell tumours which makes me feel very alone.
“I think it’s vital that, when you have been diagnosed with a brain tumour, you should be directed towards organisations such as The Brain Tumour Charity to provide valuable help and support with the emotional aspect of a diagnosis.”
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 weeks, the award-winning campaign has now been refreshed and expanded to cover the signs and symptoms in both children adults.
To find out more about the possible signs and symptoms of a brain tumour, visit here.