Your Brain Tumor Board
A brain tumor board is a team of physicians you put together for advisement on the decisions you will make regarding the treatment of your child’s brain tumor.
Every hospital has a brain tumor board. Those doctors are there to oversee the care of patients with brain tumors at that specific hospital. Your brain tumor board will consist of doctors across the country, hopefully. There is a good chance you will not even meet half of the doctors you will be talking to.
You need as many different opinions from as many different doctors as you can get. My dad had 32 doctors he called regarding my sister.
The kinds of doctors you'll need:
This is very important: You will need two (minimum) of these kinds of doctors. Each one should be from a different major center (a different, not connected hospital). Why? If you get two hospitals that are connected (take for example CHOC and Mission Hospital), then you are going to get similar methods. You need different major centers for different opinions.
How do you create your brain tumor board? That is an easy answer. You call and call until people are calling you back. Think of it like this. You’re a salesman/woman. Would it be better for you if you were selling to 10 or 100 people? 100 people. That way you have more of a chance that someone will buy from you.
When you are calling, do not flat out say “I would like you to be on my brain tumor board.” Imagine a representative from a charity asking you to donate money to their cause. Would you be very interested if someone came up to you and said: “Donate money. It’s a worthy cause”? I didn’t think so. It’s better if they explain how it’s worthy and why you should donate.
It’s the same thing here. Describe to these doctors your situation. They will want to listen. Then, mention something about them that you read (in other words, flatter them) and how it could benefit your child. After that, they will want to help.
There is a good chance that they will not respond to your call right away. They are doctors; they work night and day to save lives. So, if after 72 hours (at most) they do not call you back, call them again. Your persistence may be annoying, but it will show that you care.
Once you have your team, use them for everything you can. Call them regarding which treatments would be best at the moment. Do not go to them for infections or fevers, they will tell you to go to your own doctor for that. Make sure that you call the right doctor for the situation you are in. And make sure you call several of the same kind of doctor to get different opinions on it. If they come to the same conclusion, you have your answer.
Every hospital has a brain tumor board. Those doctors are there to oversee the care of patients with brain tumors at that specific hospital. Your brain tumor board will consist of doctors across the country, hopefully. There is a good chance you will not even meet half of the doctors you will be talking to.
You need as many different opinions from as many different doctors as you can get. My dad had 32 doctors he called regarding my sister.
The kinds of doctors you'll need:
This is very important: You will need two (minimum) of these kinds of doctors. Each one should be from a different major center (a different, not connected hospital). Why? If you get two hospitals that are connected (take for example CHOC and Mission Hospital), then you are going to get similar methods. You need different major centers for different opinions.
How do you create your brain tumor board? That is an easy answer. You call and call until people are calling you back. Think of it like this. You’re a salesman/woman. Would it be better for you if you were selling to 10 or 100 people? 100 people. That way you have more of a chance that someone will buy from you.
When you are calling, do not flat out say “I would like you to be on my brain tumor board.” Imagine a representative from a charity asking you to donate money to their cause. Would you be very interested if someone came up to you and said: “Donate money. It’s a worthy cause”? I didn’t think so. It’s better if they explain how it’s worthy and why you should donate.
It’s the same thing here. Describe to these doctors your situation. They will want to listen. Then, mention something about them that you read (in other words, flatter them) and how it could benefit your child. After that, they will want to help.
There is a good chance that they will not respond to your call right away. They are doctors; they work night and day to save lives. So, if after 72 hours (at most) they do not call you back, call them again. Your persistence may be annoying, but it will show that you care.
Once you have your team, use them for everything you can. Call them regarding which treatments would be best at the moment. Do not go to them for infections or fevers, they will tell you to go to your own doctor for that. Make sure that you call the right doctor for the situation you are in. And make sure you call several of the same kind of doctor to get different opinions on it. If they come to the same conclusion, you have your answer.
Now that you have read up on how to create your personal brain tumor board, you should refer back to what kinds of doctors you will need. The ones I listed above are generally the ones you should have. However, you should have more doctors as well.