Mark,

Actually, it IS a large medical facility (University of VA) with a tumor board. I should have made that clear in my post to this folder.

I talked to the oncologist's nurse today, and she said Scott's case will go before the tumor board this Thursday. One problem is that we came to UVa after being with a local doctor who put us off and let things get out of hand, in my opinion. So, we have only been at UVa since October and I know they are competent, concerned, etc, but it seems like trying out various chemo coctails is only going to allow the cancer time to grow. (Radiation is out since he had it a year ago on what was only a tiny spot in this mouth...)

We don't know exactly how big the cancer is (the doctor showed us the CT but it looked like those pictures being beamed back from mars), but it's big enough that Scott's right neck/jaw area has been swollen/ mishapen for over 3 months now. The roof of his mouth hurt him over a year ago but the first doctor didn't think it needed a biopsy (not even when they found the first T-1) and now we know that his whole hard palate is cancerous. So, who knows how long this cancer has been there.

I understand that the surgeon wants the cancer to shrink before surgery (because surgery will be pretty massive anyway) but how do we sit on our hands in the meantime? I feel like I'm going completely crazy one day and then I have strength to go on the next. I can't help but feel the clock ticking on this. We lost so much time with the other doctor before coming to UVa. Our hope is that the tumor board will help the oncologist and otolaryngologist find a solution. I guess I still feel so let down by the first ENT that I have a hard time fully trusting any doctor. It's like watching a bomb ready to explode any minute. I want to say, SOMEBODY DO SOMETHING but what?

I have got to be strong and positive (I usually am) but this seems to really be kicking my ass to the curb.

Christine