I had a terrible reaction to radiation but nevertheless I resisted the PEG tube. The idea of not swallowing terrified me. By my third week of treatment I was barely doing liquids and was in a lot of pain. Finally things were so bad I had no choice but to get the tube - by this time I was in the hospital on TPN. I guess my feeling is don't get it if you don't need it but for many of us it is literally a life saver. I think part of my fear was because I had been told that not many people needed a tube (wrong!) and so I became afraid that things were going so much worse than expected that the outcome was going to be terrible. Once I did get the tube my recovery sped up incredibly. I never liked the tube, it was always somewhat uncomfortable but I knew it was necessary and I did what I could to get rid of it as soon as I could. In my case getting the tube was more complicated. My throat was so bad that they didn't think they could put the tube in that way so I required stomach surgery - further complicated by having previous stomach surgery and adhesions. Also, because it was after radiation, the docs were concerned that they couldn't get the breathing tube down my irradiated throat. I was lucky, it went ok but the surgery right before mine was cancelled due to that problem.
As with all of this, everyone is different so all I can really suggest is to get all the info you can and do what you think you are most comfortable with. I told my swallowing therapist there was a treatment decision I wish I had made differently and she told me the potential complications of the opposite decision. Her advice was to not beat myself up worrying about what maybe I should have done.
Good luck with your treatment and decision.


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.