Patient stories about Proton Beam Therapy 

Annabelle Higgins, 10, from Ramsgate, Kent

In 2012 Annabelle was diagnosed with pilocytic astrocytoma, a brain tumour. Surgery removed most of the tumour but unfortuantely, in 2014 it had grown.

 
Annabelle Higgins had proton beam therapy in Oaklahoma, USA in 2015.



Further surgery followed in 2015.  However, some of the tumour had grown into the brain stem and so Annabelle was referred to the UCLH radiotherapy team. The option of proton beam therapy was discussed and agreed on as the best treatment as it would reduce the potential long-term side effects of radiotherapy.
 
Over the next few months, preparations were made for Annabelle to have treatment in Oklahoma as part of the NHS overseas programme. Towards the end of June 2015, Annabelle and her parents flew out and treatment started shortly after they arrived. While Annabelle was receiving treatment, the family felt really well looked after.
 
“Annabelle didn’t really have any side effects from the treatment. She lost a bit of hair and was a bit more tired than normal.” said her dad, Stephen.
 
Between treatment sessions, the family had some special activities arranged for them by local organisations. These all tapped into Annabelle’s hobbies of ice skating, music and drawing. “We went to the local ice skating rink and one of the coaches helped her skate and then they found out it was nearly her birthday and gave her an early party”, explains Stephen.
 
And then the family got involved the rink’s annual ice skating competition; Annabelle drew the programme cover, sang the American national anthem, recorded a sound track and performed! The family also had a tour of the local university and got involved in their Coaches v Cancer charity. Stephen said “Annabelle had a ball out there. It was a wonderful experience.”
 
Despite the great time the family had, Stephen says that getting there was “a bit fraught” and thinks that having proton beam therapy available in London will be a great benefit. “It is a bit hot in Oklahoma! And, it is a long way from friends and family. When PBT is in London there will be no long flights, no jet lag and friends and family will be near by”.
 
Annabelle is recovering well from her treatment. She is back at school and back on the ice rink, taking part in a show at Christmas. Annabelle is also part of her school netball team and enjoying life to the full.

 

 

Danny Burroughs, 12, from Maidenhead in Berkshire

It was Danny Burroughs’ love of sport that first alerted his family that something might be wrong.

Danny

Danny Burroughs, 12, received PBT treatment under the NHS overseas programme in 2014


Always active and very outgoing, Danny gets involved in any and every sport: football, tennis, swimming, hockey – the 12 year old from Maidenhead is a junior black belt in kick-boxing to boot. But after a swimming session with a friend in summer 2014, just before he was due to start secondary school, Danny noticed that his left arm wasn’t doing what he wanted it to. Later his mum Debbie noticed that all wasn’t right.

“He was playing tennis and looked over to wave at us, doing this funny little wave with his left hand, and we were thinking he was joking around. Then his hand started to curl up a bit and he was making fun of that, calling it his claw,” says Debbie.

Then during a holiday in France when the family had hired bikes, Danny’s foot kept slipping off the pedal, and he was hobbling when he walked. The family returned to London to take him to St Mary’s Hospital in Paddington, and dad Andy stayed with Danny while Debbie went home with the suitcases. “I went to get the car, thinking I’d go back and bring them home when Danny had been seen,” she says. “But then the doctors told us they wanted to keep him in to have an MRI on the Saturday.”

The scan showed a lesion on Danny’s brain which would later be confirmed as a right thalamic astrocytoma – a slow-growing brain tumour, along with a cyst. “We were just so shocked,” says Debbie. “You don’t really know what to do; there are a lot of sleepless nights. But Danny was amazing. When the doctor gave him the news he said: ‘Oh, is it a brain tumour?’ Then we all had a hug together and a few tears, and then he just wanted to watch X-Factor. He was amazing.”

After undergoing a brain biopsy at Great Ormond Street Hospital, Danny and his family saw the radiotherapy team at UCLH. Because of the type and location of the tumour, and Danny’s age, they recommended him for overseas Proton Beam Therapy in Jacksonville, Florida. 

The Burroughs Family

Danny (centre) with l-r Sam, 20, dad Andy, mum Debbie and sister Zoe, 18


Debbie and Andy both went to Florida for the first week in mid-October, when Danny had to be fitted with a special mask to make sure the PBT could be targeted at the tumour. Andy then returned home and Danny and Debbie stayed in an apartment with a hire car arranged by the Jacksonville hospital and funded by the NHS. They made the most of their time in the States, but Debbie is all too aware of how tough things could be for other families in different circumstances. “It was easier for us than it would be for other families – Danny’s brother and sister are older so could take care of themselves, for example, and other families won’t be so fortunate. But although we took some work with us it meant Danny missed a lot of school right when he was starting secondary school, when you want to make friends and get settled in a new place.”

Danny returned home to Maidenhead on 23 December after nine weeks away. He’s since had another procedure to deal with the cyst and an MRI which shows the tumour is stable, which was the aim.

“He’s doing really well now,” says Debbie. “Of course he’ll need checks every so often for the next six years as he grows up, but things look good. This Sunday he played his first full game of football for months; it’s so good to see him back doing what he loves.”


It was when talented cricketer Samuel Oliver saw two batsmen standing at the same crease when he ran up to bowl that he realised something wasn’t right.

For two years, Samuel had been suffering with headaches which had been diagnosed as migraines. But in April 2013 they became more frequent and were accompanied by double vision. Just days later, Samuel was receiving treatment at Great Ormond Street Hospital (GOSH) for a brain tumour.
 
“It’s difficult to describe how you feel,” said his mum Lynn. “The news is incredibly shocking especially when you have a child who looks as healthy as any other 12-year-old and is very active and plays tonnes of sport, goes out and is sociable. But we knew something was not quite right.”
 
Samuel had been opening the bowling for his school First XI cricket team and had to retire to the boundary where he explained to his dad that he could see two batsmen when he ran up to bowl.
 
Samuel was violently sick at school the following Monday and a visit to his GP, led to an appointment with a paediatric ophthalmologist the following day. A brain scan showed the tumour and Samuel was admitted to GOSH the same evening. The vast majority of his tumour was removed by surgeons during an 11-hour operation 36 hours later.
 
He was back in the operating theatre soon after to remove the final tiny piece of tumour before being referred to UCLH for radiotherapy.
 
It was at UCLH that consultants took the decision that Proton Beam Therapy – the world’s most advanced form of radiotherapy – would be the best treatment to reduce the risk of the tumour returning.

Proton Beam Therapy is a particularly important form of cancer treatment as it targets tumours more precisely with less damage to surrounding tissues. This can improve the quality of life following cancer treatment and reduce side effects, especially for children.

But because high energy PBT is not available in the UK, Samuel was referred to the Oklahoma Proton Beam Therapy Centre for his treatment - thousands of miles from the family home in Ealing which he shares with his mum and dad, brother Benedict and sister Lauren.
 
Mrs Oliver said: “We thought: ‘Let’s make the most of it and explore part of America we would never have visited’. But it was obviously disruptive to the household. We are always busy and there is always stuff going on but we had to take two months away from London to support Sam through his treatment.
 
“Had PBT been available in London, we would have been able to carry on with life as normal – other than two hours a day coming into town. For us, the timing of the treatment was fortunate as it was the summer holidays so the whole family could spend three weeks together in Oklahoma. Sam was also lucky that his tumour was operable so the travelling was not a huge problem and he remained physically very well through the treatment. For others it might be a different story.”
 
Samuel’s treatment was a huge success and he was starting his new school just days after the plane from Oklahoma landed back in London.

“He was completely up for getting back into normal life as quickly as he could,” said Mrs Oliver. “He returned to playing hockey for his County, he has taken up Fives, and plays squash – representing his School at both sports and is doing well academically. He’s throwing himself into everything and doing incredibly well!”

‘What PBT meant for me and how it can help others’
 
Samuel Oliver said: “It will be really helpful for patients and the rest of their families when proton beam therapy (PBT) comes to London. It means they will be able to get on with their normal lives and have treatment without needing to uproot people around them.
 
“I was lucky – I had my treatment during the summer holidays but for most patients and their families, it would not be so easy to spend months in America.
 
“When I was in Oklahoma they showed me the diagrams about how proton beam therapy means much less of your brain gets affected by the radiation compared to traditional radiotherapy. That’s a really good thing. It allowed me to have the treatment and get on with rest of my life and do all the things I did before.
 
“It’s important to stay positive during your treatment. One of the things I really enjoyed in Oklahoma was to go to a museum after my treatment in the morning or spend some time by the pool. It was really important that the treatment didn’t take over my life so I tried to make something else the focal point of my day.
 
“If people are coming to UCLH from outside of London then there is lots for them to do. It’s an exciting opportunity to explore the capital.”


Katie Swain, whose daughter Matilda was referred from UCLH to Jacksonville, Florida, for PBT said it would have made a big difference if she had been treated in London.

“It would take the pressure off parents and enable children to carry on with a normal school life and have the support of their friends and family close by,” said Ms Swain.

Matilda Penfold-Swain and her sister Georgia

Matilda, 5, went to America to be treated for retinoblastoma – cancer of the eye. Ms Swain was full of praise for PBT. She said: “The radiation would have gone into her brain if she had been treated with conventional radiotherapy. It might have affected her IQ or caused additional tumours. The more you can minimise the exposure to radiation the lower the risk of there being further problems.”


 

Two-year-old Lennie Anderton flew to America for Proton Beam Therapy in July 2012. At just 10 months old he had been left blind from cancer of the skull, but together with his parents Ed and Katherine and sister Zoe, five, he travelled to the University of Florida Proton Therapy Institute, Jacksonville, for the life-saving treatment.

 

His Father Ed said: “It would be wonderful to see families who are in a similar situation to us being able to get the same treatment here and not having to leave the country for three months like we did.”

He said his family was ‘sucked into a different world’ after taking Lennie to A&E during a family holiday in February 2012. Lennie was rushed to Great Ormond Street Hospital where he was diagnosed with Ewing’s sarcoma of the skull. “It felt like falling off a cliff,” said Ed.

“It was devastating news and we then had to go to America and leave our support network and take time off work. We made a  success of Florida – it wasn’t a bad experience – but being at home would have been ideal.”

Ed from Tottenham in North London, said that following the treatment, Lennie is making good progress and is ‘jolly and full of laughter’ and happily back at home.

 Useful links

This short film sets out how PBT can benefit patients and includes footage of what the new sites may look like.