#18312 07-23-2005 12:05 PM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 146 | Hi Dave,
Welcome! but sorry you have a need to be here. I figured I'd throw my 2 cents into the mix here. I wish I wasn't so medically "challenged" and was more knowledgeable when it comes to reading my report from surgery but what I do read and understand is pretty scary. I was diagnosed as stage IV, base of tongue. I had the surgery first - a total glossectomy - right and left neck dissection (5 positive nodes on right side), a feeding tube and trach for 8 1/2 months. Surgery was followed by chemo (cisplatin) and 37 rad treatments (not IMRT). I also had the daily shots of amifostine. The good news is I am 18 months post tx and doing a hell of a lot better than my doctors thought would be possible. With the help of a mouth prosthesis I talk amazingly well but being understood on the phone takes more patience on my part and the part of the listener. I am also able to eat pretty normally (with the help of a lot of water) except for dry foods such as chips, cookies, cake, bread, etc. I work full-time and have taken up an exercise class and 2 mile walks. I guess what I'm trying to say is that although my life is FAR from perfect or even normal, I do have a life. Your decision is a tough one but it looks like you've seen knowledgeable doctors. In my case I don't feel that I made the wrong decision. Unfortunately, even though many of our situations are similar, no 2 are alike. Your journey, whichever you choose, is a rough one but know that there are many here who have walked before you. Please keep us informed as you push ahead. Oh ... and I'm sorry I've rambled on so much!!!
Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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