Girl, 17, died after doctors ‘mistook’ brain tumour for exam worries – amid fears cancers are being confused with teens’ mood swings
Doctors initially thought Emma Sim's headaches were triggered by school pressures and it was only after an MRI scan months later that she was given the devastating diagnosis
A 17-YEAR-OLD girl died after doctors 'mistook' the early signs of a brain tumour for exam worries -amid fears cancers are being confused with teenage mood swings.
Emma Sims was 15 when she started to complain she couldn't see the board at school properly before suffering from headaches and sickness.
Doctors told mum Heather, 47, and dad Graeme, 49, from Peterhead, Aberdeenshire, that her migraines were being "triggered by exam stress and spending hours on the computer".
Mrs Sim, who also has another daughter Ellie, said the couple took Emma to see a GP three times, adding: “Once when Graeme took her, he was even told: ‘It’s not a brain tumour, you know.’”
It was only a few months later - in March 2014 - when Emma's eye turned in that she was rushed to hospital and the tumour was discovered.
She had emergency surgery to relieve pressure on her brain and in a second operation the following day, surgeons managed to remove most of her tumour.
Biopsy tests revealed it was a rare form of the disease and she had six weeks of combined radiotherapy and chemotherapy.
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After a four-week break, she then had a further 12 cycles of chemo together with a study drug.
Mrs Sim said: "Never once did we hear Emma complain.
“She was the one who kept us going and made us laugh with her mantra: ‘Kill a tumour with humour.’”
In May 2015, Emma had a routine MRI scan and the family were given the devastating news that Emma’s tumour had grown into her brain stem, and was inoperable.
Determined to live her life to the full, Emma managed to go to T in the Park festival and celebrate her 17th birthday.
But she died in her parents’ arms at home on November 19, 2015.
Mrs Sim added: “There is no worse pain than watching your child suffer and die before you do.
“There’s not one day we don’t miss Emma and long for her to still be here– she was beautiful inside and out."
The family is backing a campaign called Headsmart, run by The Brain Tumour Charity, to help raise awareness to save more families the heartache of losing a child.
The Sims have and in Emma's memory.
And there's fears Emma's family are not alone as figures from the charity show the average diagnosis for teenagers takes 10 weeks, which almost a month longer than in other age groups.
It said this is because symptoms such as mood swings and headaches are blamed on typical teenage issues such as hormonal change or exam-related pressure.
The charity launched the campaign in 2011 to raise awareness of the signs and symptoms of the disease in young people, which claims the life of one child every three days in Britain.
It was able to cut the average diagnosis time for a childhood brain tumour in the UK from more than 13 weeks to 6.5 weeks for children under 12.
But so far it has been able to replicate this for for those between 13 and 18.
Campaign manager Hayley Epps said: “Brain tumours kill more teenagers and adults under 40 in the UK than any other form of cancer.
“HeadSmart has two aims: to save lives and reduce long-term disability by bringing down diagnosis times.
“A key part of that is to make sure healthcare professionals and young people themselves are aware of the warning signs of a brain tumour in this age group.
“These symptoms can easily be mistaken for other problems that typically affect teenagers – for example, mood swings caused by hormonal changes or headaches caused by the stress of exam-related pressure.
“Another issue is that teenagers tend to be reluctant to talk to their parents about health issues.
"By the time it becomes obvious to the rest of the family that something is very wrong, the tumour may be more difficult to treat than it would have been a few weeks earlier.
“In some cases, a delay to diagnosis can even mean the difference between life and death.”
The Addley family know all too well about delays in a diagnosis after it took two and a half years for doctors to confirm Lily had a brain tumour.
The youngster, from Farnborough, Hampshire, began complaining of persistent headaches from the age of 13 but were told they were hormonal.
Kate, 38, said: "We were told headaches were a common problem in teenagers and to keep a diary to see if there was a link with the time of day or month."
The youngster was referred to a paediatrician and the blood results came back normal and she had an ultrasound, hand and chest X-rays but a scan of her head was never taken.
In June 2015, an endocrinologist at Southampton General Hospital confirmed Lily, then 14-and-a-half, hadn’t started puberty and that her pituitary gland wasn’t working, so she was referred for an MRI.
It showed a golf ball sized tumour which was pressing on Lily’s pituitary and optic nerve, with a strong possibility of her losing her sight.
Mrs Addley said: “We all cried – it was tough news to hear. But Lily remained upbeat – she’s been amazing throughout it all."
The five-hour operation went well, but they had to leave some of the tumour behind as it was wrapped around blood vessels.
SPOTTING BRAIN TUMOUR SYMPTOMS IN YOUNG PEOPLE
The most typical symptoms of brain tumours in children and young people include:
- Persistent or recurring vomiting
- Persistent or recurring headaches
- Balance / co-ordination problems / walking problems
- Blurred or double vision
- Poor balance and co-ordination
- Abnormal eye movements
- Abnormal head position
- Fits or seizures
- Behavioural changes, especially tiredness
- Increasing head circumference in babies
- Delayed puberty in teenagers
- Symptoms vary across age groups, visit headsmart.org.uk for more information
Then Lily was funded by the NHS to go to Jacksonville in Florida for proton beam therapy where she had 30 treatments and though the tumour has shrunk slightly, she still has daily injections of growth hormones.
The family are also backing the HeadSmart campaign, which has aimed specifically at young people to help spread the message and demonstrate the different symptoms.
Professor David Walker, co-director of the Children’s Brain Tumour Research Centre, said: “Since developing and launching HeadSmart, we have made real progress, halving the time it takes on average to diagnose a child with a brain tumour across the UK.
“But if we are going to meet our target of cutting the average to less than four weeks, we need to do more, particularly to reach teenagers.
“We believe our new approach, based on a review of all the evidence we have about brain tumour symptoms across all age groups, will help to achieve that.”
“It will enable doctors, young people and their families to work better together in selecting those who need a brain scan to diagnose or exclude a brain tumour."
- Visit for more information.
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