A healthy teenager has had her memory wiped by treatment to shrink a grape-sized brain tumour that caused excruciating headaches.
Charlotte Reid, 17, of Sidmouth, Devon, has had her life turned ‘upside down’ after having innovative proton beam therapy in Florida.
The NHS-funded treatment was given to the girl after doctors eventually diagnosed her with the 3cm tumour that was also affecting her vision.
Her debilitating headaches started when she was just three years old. But as she grew older, they became worse and would leave her in severe pain that could last for weeks as a time.
Over-the-counter medications proved ineffective for her symptoms, which were initially blamed on exam stress by her parents. Before the diagnosis, they even assumed her pain was caused by eating citrus fruit.
Her mother Angie, 50, a radio dispatch operator, said the treatment, which took place in 2015 and makes her forget basic things, ‘was a necessary evil’.
Charlotte Reid, 17, of Sidmouth, Devon, has had her life turned ‘upside down’ after having innovative proton beam therapy in Florida (pictured in October 2015 before the treatment)
She added: ‘Her life has been turned upside down by the side effects, which are huge and life-changing.
‘At the time, we knew she had to have the treatment to save her life. There was no choice but it has had a serious impact. She won’t remember what day of the week it is, or even what she had for lunch.
‘She never looks forward to things, because she doesn’t remember they are going to happen. She doesn’t remember if she has had a nice treat.
‘It’s quite difficult for me as a mum. I spend a lot of time answering questions for her.
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‘Her memory had been severely affected. She remembers everything before she had treatment well but everything since then is almost gone.’
Questioning the treatment
Mrs Reid and her husband, leisure centre manager Steve, 47, now use photographs, memory aids and writing notes to try and jig her memory.
She said: ‘The brain is quite an amazing thing. It can restructure itself, but it does take years. We feel we are very much at the beginning of the journey at the minute.”
‘Sometimes I have questioned whether this treatment was the right thing to do.
The NHS-funded treatment was given to the girl after doctors eventually diagnosed her with the 3cm tumour that was also affecting her vision (pictured in hospital in April 2016)
Charlotte’s debilitating headaches started when she was just three years old (pictured in hospital in Exeter in December 2015)
‘Ultimately, we had to go for it, though, because the tumour would have kept growing and getting worse otherwise. The proton therapy was the only option, as it was too difficult to operate.
‘I do ask myself, “What if we could have waited a bit longer, so she could have done things like her GCSEs?” But it made sense to do it when we did.’
Her diagnosis
Charlotte was first diagnosed with craniopharyngioma – a rare benign brain tumour that grows just above the pituitary gland in July 2015.
She had been suffering with headaches for years and, despite repeated trips to the GP, they did not identify the cause.
Doctors, and her parents, assumed Charlotte’s headaches were stress-related, as a result of her SATS and dance exams.
Mrs Reid said: ‘We thought her headaches were stress-related, because she changed schools and then had exams.
‘Then we thought they might be a reaction to citrus fruit and we had to start filling in food diaries and trying to cut things out, but it wasn’t making a difference.’
Her parents also noticed that she had stopped growing and did not go through puberty, like her friends.
Unlike conventional radiotherapy, in proton beam therapy, the beam stops once it ‘hits’ the cancerous cells, causing far less damage to surrounding tissue (pictured receiving the treatment in Florida in November 2015)
In July 2015, doctors found a mass on Charlotte’s brain and a biopsy two days later revealed it was a craniopharyngioma (her brain is pictured before treatment, left, and after, right)
But the turning point came after a visit to the optician in July 2015 after Charlotte struggled to see anything.
Referred to Bristol Children’s Hospital, doctors found a mass on Charlotte’s brain and a biopsy two days later revealed it was a craniopharyngioma.
Although the 3cm tumour was benign, the position meant surgeons could not operate safely.
WHAT IS THIS TUMOUR?
A craniopharyngioma is a benign tumor arising from small nests of cells near the pituitary stalk.
The tumor causes an increased pressure within the brain, which leads to many symptoms, such as pressure on the optic tract and pituitary gland.
As a result, obesity, delayed development, impaired vision and a swollen optic nerve are common.
Craniopharyngiomas represent up to five per cent of all primary brain tumors, and up to 10 per cent of all childhood brain tumors.
Surgery to remove the tumor is usually the first step in treatment.
But because the tumor affects the pituitary gland, an endocrinologist – a doctor trained to treat hormone imbalances – may also work with the patient on a long-term care plan.
Source: American Brain Tumor Association
Charlotte’s only option
Her only option was proton beam radiotherapy, but as the treatment was not available in the UK, she and her parents were flown to Florida for it through the NHS.
While conventional radiotherapy uses high energy beams of radiation to destroy cancerous cells, the surrounding tissue can also be damaged.
Proton beam therapy uses beams of protons (subatomic particles) to achieve the same cell-killing effect.
A ‘particle accelerator’ speeds up the protons and these accelerated protons are then beamed into cancerous cells, killing them.
Unlike conventional radiotherapy, in proton beam therapy, the beam stops once it ‘hits’ the cancerous cells, causing far less damage to surrounding tissue.
After nine weeks in the US, Charlotte and her parents returned home, with everything, at first, looking positive.
Mrs Reid said: ‘We knew that the treatment wouldn’t remove the tumour, but it had frozen it and stopped its growth.
‘Initially, she seemed to be okay, but by the December 2015, she started to show signs of confusion and major fatigue.’
She continued: ‘The tumour is stable. The proton did its job. It’s reduced in size very slightly. We know it won’t ever go away completely.
After nine weeks in the US, Charlotte and her parents Angie (right), 50, and Steve (left), 47, returned home, with everything, at first, looking positive (pictured at Walt Disney World in Florida in 2015)
Although the 3cm tumour was benign, the position meant surgeons could not operate safely (pictured writing in hospital in December 2015)
‘We actually don’t think about it very often. Day to day, we are more concerned with the problems Charlotte has now developed.’
Unsure what the future holds
Although the family continue to work with the hospital, they don’t know what the future holds for Charlotte.
HOW DOES PROTON BEAM THERAPY WORK?
Proton beam therapy is a type of radiotherapy that aims proton beams at cancers.
While conventional radiotherapy uses high energy beams of radiation to destroy cancerous cells, often damaging surrounding tissue, proton beam therapy aims radiation directly at the tumour.
Because it is so highly targeted it means it can avoid healthy tissue, particularly tissues and organs behind the tumour.
While radiotherapy can lead to side effects such as nausea and can sometimes disrupt how some organs function, proton beam therapy has a lower risk of side effects.
This means it is effective for treating cancer that affects critical areas, such as brain cancer.
Mrs Reid added: ‘Many of her problems can be controlled with medication, but it is constant trial and error. Her vision won’t come back and we don’t know what will happen with her memory.
‘They don’t really say what the situation will be but it takes a lot of time. It is a case of wait and see.
‘We are trying to look to the future and always remain positive. She follows Facebook and sees things that her friends are doing and it does upset her a little bit.
‘We never say she won’t do those things, but we just say she won’t do those things at the minute.’
‘Side effects can occur’
A spokesperson for NHS England said: ‘The range of possible side effects of proton beam therapy vary according to which part of the body is being treated.
‘However, in general, proton treatment gives fewer side effects, compared to high energy X-ray treatments, because it is a more precise form of treatment and, therefore, affects fewer of the healthy cells.
‘Side effects vary from person to person and can be affected by factors such as the total dose and duration of treatment and other existing conditions.
‘Side effects can occur during treatment, immediately after treatment, or months to years afterwards.’
Charlotte’s family are now fundraising for Brain Tumour Research, in a bid to raise awareness of the condition and to help fund research that may help others.
For more information on Charlotte’s journey visit here. Anyone wanting to donate can do so on the family’s JustGiving page.
A spokesperson for NHS England said: ‘The range of possible side effects of proton beam therapy vary according to which part of the body is being treated’
Although the family continue to work with the hospital, they don’t know what the future holds for Charlotte (pictured with her dog, Alfie, before her diagnosis in 2014)
Mrs Reid said: ‘Her vision won’t come back and we don’t know what will happen with her memory’ (the family are pictured together in Devon in April this year)