Hi jj,
some similarities to your situation, but sounds like you've had more surgery esp. with teeth & gum.

In September i had surgery: jaw split, 1/2 my tongue removed and a graft with muscles/skin from my chest to rebuild part of the tongue & the floor of my mouth. I had a left side neck disection with 67 lymph nodes removed - the good news, no lymph involvement. I was classified as T2, N0M0. But also was told that it could also be considered T2-3 (clear margins but not as much as some would like to see, moderatelt differentiated cells, invasive direction of tumor growth were concerns to some doctors). It is hard when you get different answers or opinions from different doctors!

At first (pre-surgery) the drs discussed surgery followed by radiation. After surgery, because the surgery went very well, I was given the option of doing radiation or not.

Because it sounds like your cancer was a little more extensive than they thought pre-surgery, that it might not be a T2 anymore, or may be leaning towards T3 (which is similar to my case), if so, that is a reason, in my opinion to be more aggressive with treatment - especially if they think it may have gone into the bone (which then would not be N0M0).

I sympathisze with you're having to make this tough decision!! We went for 3 opinions. In the end I decided to go for the radiation (IMRT), just to be on the safe side and hopefully get any tiny cancer cells that might be lurking.

If I read your posting correctly, you posted the day after having the 2nd surgery? Wow, you are recovering quite well it sounds! Good for you. A positive attitude sure helps.

My experience with radiation was not as bad as others. MY feeling is, that if you can go through the surgery that you've done, then you can do the radiation. Don't let fear of treatment prevent you from seeking it!! While it is not fun, it is bearable. I kept thinking I could get through a few weeks of discomfort if it would help to get rid of the cancer, and hopefully prolong my life a bit. It helped to just take things day by day, treatment by treatment.

The saliva, dry mouth, eating issues are there. But as someone else said on this board, it becomes the "new normal" and I find that we are stronger than we realize. While changes and discomfort are scary, we can deal with them. Often the hardest part is the waiting, and wondering!

Now, 2 months post radiation, I still have trouble eating, but have regained a lot of taste, can eat many foods, although it is slow. I am trying really hard not to lose any more weight. I have contined to lose weight since September - about 45 lbs total. I had weight to lose, but don't want to go any lower. I did not have a PEG (just a nose feeding tube for ~ 3 weeks post surgery).

My energy level fluctuates - some days I'm energetic. Others I'm exhausted and need to sleep. But I feel SO much better than 2 months ago, and THAT is a great feeling.
good luck,
michelle