How To Get Proton Treatment
Have you ever heard the saying timing is everything?
This is the case with being able to have your child accepted into a proton center. As soon as a diagnosis is made, a parent should go the National Institute of Cancer and search for the disease specific protocol (www.cancer.gov) . There are also many disease specific sites that will include the protocol for that disease. Many proton centers will require pathology samples to reverify the diagnosis. I can't tell you how many parents tell me that at first they were treating one disease only to be told later it is another. Yes, cancer is cancer, but each type of cancer (there are thousands) has a protocol assigned to it. The protocol is the approved treatment plan for that disease.
Once you determine radiation treatment will be included in the protocol you need to determine if proton is appropriate for your child's case. You should start consulting the proton centers of your choice. Please see our section on Proton Centers. Each proton center verifies pathology (which takes several days to obtain the sample and have it shipped), they usually require new scans done on a finer scale for later planning, and of course all medical records (see our section on what is required). Each center only has so many slots available to treat pediatric patients at one time. The sooner you start, the better chance you will have of winning one of those slots for your child. Typically, a "tumor board" meets weekly to determine if your child's case can be treated appropriately with protons. So if they meet every Wed. and your info rolls in Tues. afternoon, chances are you will have to wait over a week just to get your case reviewed. You must be proactive and get the records so the reviewers can quickly see what's going on and react accordingly. Many times, children are not able to be treated because too much time has passed and the application process is unable to be completed in time to meet protocol requirements.
I can't emphasize this enough - Do not wait! Rush and do what it takes because your child's life is on the line!