Proton Beam Therapy is a type of radiotherapy. Traditional radiotherapy uses beams of x-rays which damage the cancer cells meaning that they can no longer multiply and so die. Despite recent advancements meaning that radiotherapy can be a lot more focused the issue remains that the beams do not discriminate between healthy tissue and cancerous tissue. Neither do they stop when they pass through the cancerous cells, this means that they can cause serious side effects as a result of damaging the healthy tissue that it passes through all around the tumour.
Proton Beam Therapy uses Proton Beams rather than X-ray Radiotherapy to target tumours. Proton Beams are made up of protons and kill the cancer cells in the same way that radiotherapy does, but the main difference is that proton beams deliver maximum energy to the tumour and then stop (known as the Bragg Peak if you’re interested!). This means that it causes a lot less damage to the surrounding tissue than traditional radiotherapy.
This is especially vital when treating children as their brain and body are still developing and they’re more susceptible to the long term side effects caused by damage to the surrounding areas. Additionally the early exposure to radiation in x-ray radiotherapy means that they’re also at an increased risk of developing a second cancer later in life.
Although Proton Beam Therapy still carries some risks and uncertainties the expected reduction in long term side-effects of the treatment is something that has encouraged the NHS to fund the development of two Proton Beam Therapy sites in the UK, one at University College Hospital in London and the other at the Christie Hospital in Manchester. These units are not due to open until 2018 though, so until then the NHS funds suitable candidates to travel to one of two US Centres.
The NHS covers the costs for the treatment, travel and accommodation for the child and up to two carers but there can also be significant extra costs such as additional medical treatment, living expenses, travel and accommodation for siblings, not to mention the continued financial obligations of families in the UK for the duration of the treatment. The average length of treatment time is 8-10 weeks, when many families are unable to work. Ben’s Heroes Trust supports families who have been referred for Proton Beam Therapy with the endorsement of their Consultant Oncologist, by offering financial grants to help with these additional costs.
But what really happens when you pack up your bags and go for Proton Beam Therapy?
We asked Natalie, who's son Max went out to the Procure Centre in Oklahoma, to let us know:
NHS Proton Beam Referral
After a meeting with the Oncologist at Birmingham Children's Hospital and the radiologists from the Queen Elizabeth (QE) Hospital Birmingham, it was decided that given the type of cancer, Max's age and the reduction of later side effects of treatment, Proton Beam Therapy was the best choice for my son. There were no guarantees that he would be accepted by the International Board for funding, as the doctors have no control on the decision making.
The process was very fast; four weeks from start of the application to date of travel. We quickly applied for a passport and the medical team set about contacting the Clic Sargent social worker Liz Morrey at Birmingham Children's Hospital, once approval seemed imminent. Most of the correspondence was done via email and was a very swift efficient process. It was a scary time, not knowing how I was going to manage financially with the extra costs and what to do with my other children. Both of which I believe are common worries amongst parents of children with cancer.
Travel to America for Proton Beam Therapy
We were in Oklahoma from the beginning of May 2014 until July 2014. Max and I were initially worried about being away from family and friends and of course the medical staff in the UK. The journey was a long one, we opted for three plane changes as we wanted to fly from Birmingham, a very long and tiring 24 hours! The seats were not together on any of the flights, and I had to appeal to everyone's better nature to get seats together.
We flew with United Airlines, a fairly budget airline in comparison to Virgin but we were on our way and only through the generosity of the NHS, so we didn't complain.