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Thursday, 9 January 2003

I was just thinking, the National Brain tumor Foundation publishes all these little booklets called things like Brain Tumors: What You Should Know. I had at least thirty little pamphets, all with names like that. There's a key section that's missing from every single one of these. They need to say:

You will be getting radiation. There is no treatment aside from radiation. Everything we've been telling about other treatment techniques only applies to people with surface tumors and even for them most of this is just experimental stuff we're hoping will work, but that you can't actually get. Anyway, even if you want to try something experimental, you'll still need radiation first. Make sure that when you get a referral to a neuro-oncologist, you get a referal to a radiation oncologist right then at the same time from the same doctor. It takes forever to get on calendars. You don't have forever. Get the referals now. And don't wait for second opinions unless the first doctor seems hesitant. You will be getting radiation. You don't need another doctor to tell you that too. There is no other treatment. If you get diagnosed in the summer time, you don't need to go see a head of a department at the university. It's better to get on the calendar of somebody less prestigious than to wait weeks.

The chances that you found out about this before it was critical are slim. Who really goes to the doctor for headaches? You've just had a big piece of your brain cut out. You had no idea anything was going on until you had a seizure or stroke-like symptoms. All the optomistic statistics people have been giving you mostly apply to people who are younger than you are and who by some freak stroke of luck had their tumors detected early. You are probably not in that group. Every day counts for you. If you want treatment, you need it today, not three or four weeks from now. Get on calendars as fast as possible and as soon as possible. Skip as many steps of beauracracy as you can. Get as many referals as possible from your brain surgeon and make sure that they're for people who actually will be working directly on your treatment. You can get a treatment plan in place for radiation before you go see the head neuro-oncologist. This saves you several days. Important days, right after the surgery, when the tumor is cut down and you have more of chance. You'll be getting radiation. Get it as soon as you can.

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