I believe one important aspect of the PEG question is that in the midst of all this stuf that is out of our control, comes the PEG and we do have some control! The PEG gets the focus of our attention because of that.

With regard to radiation vs surgery, my two recent surgeries needed a PEG as part of the recovery process because my throat was swelled to the point where I needed a "breathing PEG" (aka trach) in addition to the "food PEG".

As I pointed out in another thread, having the PEG installed prior to surgery meant that they DIDN'T install a naso-gastric tube and suture it to the inside of my nose (Ouch, fer sure!).

Wow, flame throwers n stuff, I like it here!
I was lucky and was overweight and had time to add much more weight before treatment.
Loading up on morphine and force feeding still lost me 50 pounds and doctors were FREAKING.
I don't know if I would refuse the tube if I had to do it again. As it was, the last few weeks my gut was shut down from the morpine and all the Cream of Wheat I was drinking turned to cement.
Was it worth all the risk just to avoid the tube and the side effects? Hmmm, perhaps playing it safe and giving myself the best shot at survival would have been better, but I would have missed out on the cement thing.

No flames, just my $.02 worth...

I had seven weeks of IMRT with concurrent Cisplatin for hypo-laryngeal SCC (including BOT). No surgery. Trach was installed prior to treatment after difficulty with airway after first biopsy. PEG became necessary to supplement daily nutrition around week 3 and by end of week 4 had become the principal nutrition source. I didn't (re)start oral feeding until about three weeks after treatment had ended and stopped using the PEG entirely about four weeks after that. My ability to eat "normally" improved considerably after the removal of the trach tube.

Advice from my doctors was simple: IF you can take nutrition orally, then good; otherwise, use the PEG. I was able to hold the total weight loss through treatment and recovery to only 20 lbs (10%).

Anyway, I was never able to develop a taste for Ensure or Boost so being able to bypass the bits that taste and smell was a good thing...at least for me.

Vern, the cement was a function of the morphine and probably how the food got in there (oral, PEG or NG tube was moot). In fact, ingesting solid food might have been worse because it isn't a liquid to begin with.

BTW, anyone experiencing difficulties should also try changing the stuf going down the tube (throat or PEG) as some stuf may do better than others for different folks -- That was the first thing the food supply dietitian recommended when I was having the sweats, nausea and runs at first (I was ahead of her, having tried the semi-drinkable stuf, the Safeway stuf and good ol' VHC).

In the event, the problem turned out to be that for some reason I just couldn't take even the moderate feeding rates, which is why I acquired my trusty Kangaroo pump and set it to crawl, not hop -- Dunno why that was, but if I was taking it a hair too fast, a light case of facial sweats would alert me and I would dial it back some. Wasn't a problem on my first PEG, so I dunno why it was on the second PEG.

Maybe it is the location of this PEG tube Pete. I don't remember who it was that posted about feeding too fast with the PEG and throwing up, but it helped me a bunch. I was trying to just pour the food and water in the tube, get it over with and go do something else. I kept getting the sweats and throwing up all of my food. Then of course, I had to start over again. I started putting less of the food and more water and taking more time to do the feedings and things got better. For a long time I had to lie down immediately after a feeding or I would get sick, but that improved also.

Now I am able to get enough calories to maintain my weight (all 97 lbs) and I am adding things by mouth in the hope that I will gain weight. Once I am closer to a normal weight I hope to be taking in more by mouth than tube so that I can start to wean off the tube completely and have it removed this summer.

Patty

Having been through this a couple of times, I find the only real reason for wanting to get rid of the tube is so I can use the public pool and hot tube (No open sores, wounds, etc., allowed).

However, to me it is no longer a symbol of the suffering from the radiation treatment, rather a device that allowed me to be self-sufficient and get out of the hospital! Perspective is the key.