Well folks the shoe dropped... A week ago Friday I had my biopsy surgery. It was done under general anesthisia because the spot was way back on my tongue almost to the larynex (sp?). On Monday the priliminary test came back negative (frozen section test). On Friday my ENT called to say that a few of the slides were "abnormal and suspisious"... He was reading from the pathologist report. From there he painted an extremely grime prognosis. More sugery for "staging", radiation, etc. Since this is so far back on my tongue I feel I'll have a 100% removal. I'm in shock, not denial, just out and out shock. Many of you have been there.

On Monday my ENT will meet with the pathologist personally. I'll meet with my ENT later that day. From there we will deterime what to do. Second opinions? Other doctors? Etc.

A special thanks to Brian Hill and many of you folks who post. I think I have read the whole site and know quite a lot about what to expect.

Steve

Hi Steve,
I know about shock, I passed out in the ENT's office when he gave me the Dx. That was over a year ago, by the way. I had to get on anti-anxiety meds to function. My first ENT basically told me to get my affairs in order, my second ENT was a LOT more optomistic about my prognosis.

Don't let your imagination run wild just yet, although I know it's hard not to. There is still a lot to be done before they know the best way to treat it. Some of us here have had no surgery at all - just radiation & chemo and have had a complete response.

Since this is so early, you want to consider finding a comprehensive cancer center with a coordinated multi-disciplinary team to help manage your case if you are not already in one.

Duke would a good one http://www.nccn.org/profiles/duke.htm

Sorry about the news, Steve. If your insurance will cover it try for treatment at a cancer center in your area. When hubby was originally referred to Roswell Park Cancer Institute in Buffalo (we lived 2 hrs away in PA), they wanted the original slides wo they could examine them. They were the ones that came up with the official diagnosis, not the local pathologist or even the lab in Pittsburgh.

Don't worry about the prognosis, staging, etc. Get your head into getting well - a positive attitude is the best thing you can take into the days ahead. Educate yourself as much as possible. And use this board, there are some very knowledgable folks here!

Don't let your mind start wandering to the thoughts of a complete glossectomy as most base of tongue cancers can be treated with radiation successfully, allowing you to keep your entire tongue. Do not rely on a singular doctor to determine your treatment plan. A doctor in private practice may believe that his particular training is the best route, and they may not interface with oncologists from other disciplines. (ENT