Dialog to have with Child's Oncologist
Let's See - How Shall I Put This?
You need to first discuss proton with your child's oncologist. Prior to this conversation, review this site and become familiar with proton centers and consider which center you would prefer to get treatment. This can be based on a variety of variables such as geographic distance, support network you may have in a certain city etc. You have to consider travel time and accomodations. So it is best to have these things predetermined in your mind so you can rationally discuss this with your oncologist. You may call one or two of the centers you would consider and discuss the application process and your child's case. Every contact you make will prepare you for the meeting.
Please note over 85% of proton cases are self-referred by the patient or the patient's caregiver. The best case is to have your oncologist refer the case to a proton center and make a doctor referral. Your doctor, in consultation with the proton center professionals, can determine the best plan of treatment through information sharing and consultation. Also, it is important to remember that overall cancer treatment, including most chemotherapy, will need to continue through proton treatment and it needs to all be coordinated through the providers. The doctors, access specialists, and nurses can assist in so many ways including helping you make the case for your insurance company to cover the treatment as well. However, the statistics prove that many pediatric patients treated with protons were treated because the parents fought for it.
Here are some ways to get the ball rolling:
Be respectful, but state your position.
"You are doing a great job taking care of my child, and I would like to discuss considering using proton radiation for the radiation treatment phase of my child's treatment plan. I know we need to discuss this early on because many of the centers require adequate time to process a new patient's case."
Do not accept a quick brush-off or a quick "no".
"I would like for you to seriously consider proton as an option. I have done a lot of research on my own, and determined this may be an appropriate option for my child. I need to feel everything has been explored that may benefit my child and I would like US to consult with X (top one you are considering) proton center"
Let them know you are serious. Be ready and make it easy for the doc to say, "yes".
"I have already contacted several proton centers that believe my child's case is appropriate for proton. Would you be willing to speak to the X (the top one you are considering) Center proton doctor to discuss my child's case?"
OBSTACLES WILL BE MENTIONED, LIVING IN A DIFFERENT CITY, SUPPORT WHILE YOU ARE THERE ETC. SAY THIS TO ANY OBSTACLE PRESENTED:
"I/We are committed to helping our child to fight cancer while preserving any chance my child has of living a normal life after treatment. We know there are support groups, social networks and foundations that will support our cause of getting our child to proton. We need your support now to complete the application process."