Michael, In some ways, I did go to a CCC. My local hospital (Cayuga medical Center) has formed a partnership with Roswell Park in Buffalo, which is a CCC, and my radiation oncologist is from Roswell Park--for now he is here three days a week and there the other two. They have the latest in quipment for IMRT radiation right here. That's the thing that made me decide it was OK to stay. But it was a hard decision.
When I was diagnosed they had JUST opened and there have been some issues with that--namely that, for example, they aren't set up to do clinical trials here yet (not really an issue for me) and the coordination between my rad oncologist and the other people on my "team" (ENT, medical oncologist, dentist) is not nearly as tight as it would be at a CCC. And none of these folks is specifically on a head and neck cancer team. As I understand the way Roswell Park is organized, the people that work on specific types of cnacers do not really include the rad. oncologists who are kind of separate and make their own decisions about radiation treatment in which every case is reviewed and a recommendation is voted on by all of the rad. oncologists on staff.
I got a second opinion from the head and neck group at Dana Farber in Boston because of this, and because the first rad. oncologist at the hosptial here (hired by Roswell Park folks just to run the faiclity here)was saying I didn't need rad (he later left--rumor has it was asked to leave because he was making wierd recommendations but that could just be rumor and that's when my current rad oncologist, who has been at Roswell Park for years, started practicing here three days a week) .
You might want to go to at least two places for opinions on what treatment would be best for you. I found out that even after that, the opinions from Roswell Park about what treatment I should have and the opinion from Dana Farber differed. D.F.'s was more aggressive (this is partly because I'm stage II and there's more gray areas there I think) and I ended up insisting that the facility ehre follow their recommendations.
And they did end up doing that here, although I wonder if they really did absolutely everything they could to keep my chemo treatments proceeding on time (which is important since they were only being done to amplify the effects of radiation, which did proceed more or less on time). I had a low white blood cell count that prevented the third chemo for so long that rad. was long over by the time it was high enough. I think there are proactive things they could have done to prevent that (such as that medicine they advertise on TV all the time that keeps up your WBC)but I am hoping that since the first two cehmos affected my blood so strongly, the two chemo treatments I got also did what they needed to to kill extra cancer cells.
One thing to be aware of is that the fancier types of radiation (IMRT) require a lot more lead time to program after they've done a CT scan to map your head and neck. Two weeks is standard based on what they said both at DF and here. If you need teeth pulled, they should be pulled before the mapping by a couple of weeks. So that's basically a four weeks delay between any teeth you need pulled and when rad can start. And timing is important. ideally there should be no more than 100 days between your surgery and the END of radiation (standard radiaiton time is 6-7 weeks). Mine was longer than that, unfortunately, because of those things--and that I didn;t get teeth pulled until I had gotten the second opinion, which took another couple of weeks. So you need to get opinions quickly.
Good luck with that. I got a lot of feedback and help from people during that time that was invaluable in getting the treatment I finally got. Lots of good advice and experience in here.
Nelie
