Improving Brain Tumour Care surveys share your experiences and help create change

Launching our new signs and symptoms campaign

We are really excited to launch our new campaign, Better Safe than Tumour, to raise awareness of the common signs and symptoms in both children and adults.

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 our 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 and adults.

We launch the campaign today, as a new analysis of NHS cancer incidence data show number of people being diagnosed with a brain tumour in England has risen by over 50% in the last two decades (2001-2019), according to an analysis of NHS cancer incidence data.

While the disease remains relatively rare overall, the number of people being diagnosed with a brain tumour rose from 6,577 in 2001 to 9,960 in 2019, with the age-standardised incidence rate increasing 14.8 to 18.3 cases per 100,000 population. Further analysis by The Brain Tumour Charity suggests that there were nearly 250 fewer cases diagnosed in England in 2020-21 compared to 2018-2019, following the impact of the COVID-19 pandemic – a decline of nearly 2.5%.

The figures follow a 2021 study by King’s College London researchers, published in Neuro-Oncology, showing that incidence of two of the most common forms of brain tumour in adults — glioblastomas and meningiomas — more than doubled between 1995 and 2017 in England.

Experts believe the increase in cases could be explained by the ageing of the population and advances in detection and clinical practice, including the adoption of new diagnostic and imaging tools, and improved classification and data collection.

The Brain Tumour Charity today called for greater awareness of the potential signs and symptoms of the disease as it today launched its new campaign, “Better Safe than Tumour”.

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:

“These worrying figures show just how urgently we need to act on this devastating and life-changing disease. 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.”

Professor Keyoumars Ashkan, Professor of Neurosurgery at King’s College London and Consultant Neurosurgeon at King’s College Hospital NHS Trust, said:

“In recent decades, we have continued to see the growing burden of brain tumours in the UK. Even though they are uncommon, brain tumours remain the leading cause of cancer death in children and adults under 40 and they continue to have such a major impact on the quality of life of those diagnosed.

“The overall rise in incidence appears to be driven largely by glioblastomas, which unfortunately remain incurable and can come with such a heartbreakingly short prognosis, and slower-growing meningiomas, which account for a quarter of cases and are more common in women.

“Several possible factors could explain why cases have increased so significantly, including the ageing of the population, advances in clinical practice including the adoption of new diagnostic tools, classifications and molecular testing, and improved cancer registration practices.

“We have seen significant steps forward in surgery and care in recent years which are now beginning to bring hope for patients, but we have to keep up the pace of progress. Greater awareness of the signs and symptoms will be crucial to ensuring that more people can receive the diagnosis and treatment they may need as soon as possible.”

Natasha Tims, now 30, from Somerset, experienced some of the common symptoms of a brain tumour in teenagers – having 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.”

Nine-year-old Noah, from Essex, first began having symptoms of an ependymoma brain tumour in 2019. He had headaches and sickness, especially in the morning, for a few weeks. His mum, Lucy, took him to A&E where she was told about The Brain Tumour Charity’s prior signs and symptoms campaign, HeadSmart.  When Noah’s symptoms persisted, they took Noah back to A&E where a CT scan found the tumour.

Noah had surgery to remove the tumour, which was the size of a golf ball, followed by proton beam therapy and radiotherapy. He has regular scans to monitor his condition, which continue to be clear, so Noah can now enjoy singing, dancing, playing with Lego and helping out on the family’s farm.

Lucy, Noah’s mother, said:

“Although brain tumours are rare, they still happen more often than you may think. However, many people still have never had experience of a brain tumour so there’s a definite need to raise awareness of the signs and symptoms amongst the public so they are well informed should it happen to them.

“The HeadSmart website confirmed my concerns about my son’s symptoms. That is what encouraged me to seek further medical advice, which led to both a prompt diagnosis and speedy treatment, resulting in the happy and healthy boy we have now.

“Brain tumours are nasty but a quick diagnosis and effective treatment means that the repercussions of this disease can be less disruptive to the lives of the person affected as well as their loved ones. If someone believes that they may have the symptoms of a brain tumour then they must not be reluctant about seeing their GP and being persistent. Go armed with a symptom card and the knowledge this campaign provides.”

To find out more about Better Safe than Tumour and the possible signs of a brain tumour, visit headsmart.org.uk