jj,

I can't add much on the radiation issue except to say that I agree you should have RAD, IMRT if your doc says you are a good candidate for it. As for the small mouth issue, that doesn't seem to have been a major issue with most people. I think Heather had the worst case of trismus (lockjaw) of anyone here. But hers was not from the RAD. It was a combination of the surgery and the fact that there was another tumor growing that the docs weren't aware of. Her surgery was similar to yours, but she had a mandibulotomy, which was the major surgical cause of the trismus.

One thing I will add is that I feel there is an advantage to adding chemo to the RAD. It can cause more complications, but it gives the RAD an extra boost. It is worth asking your doc about.

My 2 cents on the PEG tube..........you will probably need one, but I wouldn't get it too soon. Wait and see how things go first. The longer you can eat regular food, the better. But let your doctor know right away when eating becomes difficult. Once the tube becomes necessary, you don't want to delay. Or you could get the tube right away, but use it only when necessary. Some people breeze right through with no complications. Other people end up with swallowing problems, etc. So I don't think it is good to rely on the tube before you have to. Conversely, it is not good to try to do without one if you do have difficulty eating. You need to have good nutrition in order to heal. Good luck.

Rainbows & hugs, wink
Rosie

P.S.
I still have Heather's Therabite appliance. If anyone here needs one and your insurance won't cover it, you can have this one. Just e-mail me. Also have some feeding bags left. Free for the asking.

Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.