News and events


UK chordoma patient choose Prague for his PBT treatment

An excellent article from The Express. The full article is via this link but here's a précis.

BACK pain similar to that of a a slipped disc was actually a warning sign of a rare type of cancer - a man has revealed. The sufferer has described how he chose proton beam therapy instead of an operation he said could have caused him to lose his bowel and bladder.

Tim Ingrouille, 55, a motorcycle enthusiast diagnosed with a rare form of cancer has spent £60,000 on pioneering treatment to fight the disease - so that he can get on with his life and back on two wheels.

Tim had been suffering with back pain for years, something he fobbed off thinking he had slipped disc.

When the pain got worse and worse, he eventually saw his GP in 2015 and was promptly sent for an MRI scan.

It was only then that Tim, a father of two and grandfather of four, was told he had ‘chordoma’ - a large tumour the size of a small melon sitting on the base of his spine.

Because the tumour sat close to vital structures, like his spinal cord, he couldn’t undergo traditional radiotherapy as it might damage nearby organs.

He was instead encouraged to undergo surgery to remove the growth.

But not only did he run the risk of becoming paralysed, he would have also had to have his bowel and bladder removed too.

Tim said he refused to entertain those suggestions and instead began exploring other alternatives - which led to him having proton beam radiotherapy in Prague, Czech Republic - an alternative to X-Ray radiotherapy.

The treatment utilises a narrow ‘pencil beam’ of accelerated particles to penetrate and attack deep-lying tumours, without causing damage to surrounding tissue.

Having seen a specialist in London last month, Tim said he has not only curbed the tumour’s growth but has seen such a drop-off in pain he’s now back riding and tinkering with his  motorbikes.

Tim, from Guernsey, said: “My surgeon wanted to chop me open, remove my bladder and bowel, possibly paralyse me in the process and turn me into something of a vegetable, which I wasn't too keen on as you can imagine.

“They talk about months in hospital, coming back home and then having ongoing care for the rest of your life.

“I declined their generous offer. Then I tracked down the Proton Therapy Centre in Prague and emailed asking them to consider me for treatment.

“And thankfully I was accepted. It wasn't cheap - two months in Prague with all the costs was about £60,000.

“But, ultimately, what the treatment will do is give me a quality of life I wouldn't have had, had I gone for the surgery.

“Anything that can delay that has got to be a positive thing as far as I'm concerned. I'm feeling a lot more positive now than I was before the treatment.

"I’m as active as ever and leading a normal life. Prior to Proton Therapy I couldn't even drive the car or sit on a motorbike for the pain.

“Now I can spend hours riding with little pain, this being just one example of how I've improved since treatment.

"I've cut down a lot of the morphine I had been on, down to about a quarter of what I was taking 12 months ago.”

Tim, who retired aged 44 after selling his finance brokerage business, had 37 'fractions’, or sessions, of proton therapy in September 2016.

Proton therapy - which is only made available to NHS patients in rare instances, typically involving child cancer patients - works by accelerating protons until they reach half the speed of light. They are then targeted at cancer cells with pencil-point precision.

Unlike traditional radiotherapy using X-rays it can home-in on the exact area to target, preserving healthy tissue in front of the tumour and preventing damage to the tissue behind it.

Tim, supported by his 53-year-old wife Sally, spent 10 minutes a day, every day, undergoing the treatment over the course of two months.

“The only side effect was a slight burning of the skin at the site where the protons penetrated into my body, but I’ve since seen a real improvement,” he said.

“I met with a specialist in the UK in April and was told that my tumour showed small signs of growth, but very minimal. In effect, the growth has been halted.

“My consultant sees no reason for me to have further scans or consultations for 12 months, as opposed to my previous six monthly appointments.

“The pain has been vastly reduced and my daily and bodily functions, like bowel and bladder movements, are more or less normal.

“I may have to have surgery in future, but that seems to be some time away now thanks to Proton Therapy.

“The treatment has given me my old life back and I stand by my opinion that surgery should not be a first line attack for chordoma - it’s a last option rather than the first, especially for such a major surgery.

“And in the meantime, I hope more proton therapy centres get built in the UK so that more people in my situation will be able to have it funded by the NHS.”

Jiri Kubes, Medical Director at Proton Therapy Center, Prague, said chordomas are particularly tricky to treat with standard methods.

“Chordomas sit close to vital structures and it is extremely difficult to remove the tumour without causing damage to them,” he sid.

“The tumours are composed of jelly-like material, making it easy for microscopic pieces to be left behind after surgery and therefore the chances of recurrence are high.

“And because they’re rare, some surgeons are simply unable to recommend a good care pathway for chordoma patients.

“That’s why proton beam therapy can be so effective.

“Not only can it shrink the growth of the tumour by attacking it with precision, damage to surrounding tissue is minimised.

“In Tim’s case, proton therapy has enabled him to avoid surgery that could have left him bedridden, meaning he can continue living his life as normal and indulging in his passions and hobbies, such as motorcycles.”


Want to make a donation?

You are the reason we can keep providing our vital supprt and funding. Individual donations and gifts may be made directly to Chordoma UK and enhanced through GIFT AID. Your fundraising can benefit from Chordoma UK`s charitable status enabling donations to be made through the Gift Aid scheme directly to the Chordoma UK bank account.

Donate now

Join our Mailing List

Please sign up to follow our ongoing story and events.


How your donation is spent

There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

Find out more

Get in touch

If you have any questions about Chordoma UK, or would like to talk to someone about cancer, send us an email and we'll get back to you as soon as we can.

Contact us


We all support each other

To share experiences, ask questions or vent your emotions and find others who understand.

Join us here