Hi there!
I'm a newbie to this site but an old timer to ACC. 1990 I had the uvula removed and diagnosed as ACC, 1993 a 13 hour neck resection removing soft palate, eustachian tube, malig nodes and general clean-up, then 9 weeks rad. The usual complications but a joyful new life in a sunny new state for 12 years! Now they're finding it all over the primary site again. From soft palate down to base of tongue over into the mastoid bone and neck muscle, up to the eyes. Scary. My new Dr. says "Oh, well. You've already survived longer then most. It's inoperable." I think he's one of the lazy ones who doesn't want to deal with post rad tissues. So, I'm heading up to Oregon today to see my original surgeon. He's the one who took a chance when everyone else had given up 12 years ago. If anyone can come up with a game plan, it'll be OHSU.
Has anyone had good luck with chemo? Taxol seems to be common. At this point I'll try anything. After a "cancer divorce" 9 years ago I just got re-married a year ago. We've got way too much still to do. smile
Ali Mae

ACC of soft palate diag. '90; neck resection '93,removal of soft palate, nodes, eustachian tube, rebuilt palate with arm tissue; 9 wks radiation; lung mets and positive nodes '05, no treatment possible.