Proton therapy in the US
Why proton therapy?
The developing brain is very sensitive to standard radiotherapy (photon therapy.) Under the age of 3 it is best avoided as it can cause such devastation within a young child’s brain that development is severely limited. It causes this devastation as the particles used to kill the cancer cells are deflected into normal brain. We decided right at the beginning of Thomas’ cancer journey that we would not subject him to standard radiotherapy as we want him to grow up as Thomas and not as a shell of Thomas.
Proton beam therapy is supposed to be less dangerous in the young brain as the particles which are used to kill the cancer cells do not spread beyond where they are targeted, and as such have less potential to cause developmental problems for children. However, there is not a lot of long term follow-up data and as such we feel that we are taking a leap of faith in science in subjecting Thomas to the new therapy and we hope that we are making the right decision.
Why the US?
Basically there are no proton therapy machines in the UK that can treat brain tumours. There is one machine in the Clatterbridge Centre for Oncology (www.ccotrust.nhs.uk) which can be used for the treatment of eye cancers.
The NHS has a contract with the University of Florida Proton Therapy Institute and two other centres in Europe to provide what is a very specialised service. www.specialisedservices.nhs.uk
What it entails for Thomas
The preparation for, and the administration of, proton therapy is very similar to standard radiotherapy (photon therapy.) Thomas will spend some time being fitted with a mask and small bolts so that the radiotherapists know where exactly to aim the beams each day that Thomas goes for proton therapy.
Once the planning is complete, Thomas will have a general anaesthetic every day for 10-15 minutes whilst the proton therapy is administered. This is because he is too young to stay still. He will return every week day for 6½ weeks for the therapy, but will get the weekends off. He may well feel sick and tired, both during and after the treatment.