@deb26 it is tough having a rare form of cancer, as there is less information on proven treatments. The more specialized your oncologist is, the more up to date information they will have available. A very rare cancer may not have specialists available who concentrate on that one particular type. Sometimes in researching you can come up with a name but often those doctors will be researchers, not practitioners seeing patients. Our area does not have an oncologist specializing in Head and Neck which is why we travel to Mayo. Initially I felt that the doctors there were more experienced in the surgery I needed as opposed to local ENT's who may have performed only a few. The Head and Neck oncologist in Rochester, Dr. Price, is an amazing doctor. She has been my hero from the first day we met in the hospital after surgery. I hope you can find someone in whom you can have the same faith. Where are you located?