Hi everyone David goes in for his surgery to remove the cancer Jan 8th @ 5:30am. We're not sure if the Dr. is going to radiate prior to surgery - he said he would decide when the morning of the surgery.

I've seen where the feeding tube is highly recommended if radiation is involved. I wanted to ask your advice on whether or not he should have a feeding tube even if the Dr. doesn't radiate?

As of right now - David does not want the feeding tube at all. He agreed if he loses 10 lbs he'll get a feeding tube put in (of course I argued that he would want to get it done during this operation to avoid another trip and surgery - not to mention however long he will have to endure being hungry / losing weight). I'm just not sure that his expectations are reasonable...

Your advice is greatly appreciated.

-Philly

if they are not radiating, i would go by what doc suggests... many do not have it put in from just a surgery but doc will know if the surgery he is having would be a slow enough recovery for eating that it may be suggested....

if there is radiation coming though ALWAYS have it done prior to starting radiation. the nurse told me that they see people wait until starting radiation, and then they come in for one and it is hard to get them to settle enough for the procedure because they are do uncomfortable ,..

but if no radiation and only surgery then it may well not be needed and waiting to see if needed may be in his best interest. you sure don't want one unless it is needed, but you sure as heck don't want to be without it if it is needed ... so see! I was sure a lot of help, wasn't I? LOL

Usually feeding tubes are done on patients who are undergoing both radiation and chemo for oral cancer. With only having surgery, Im sure it would depend on the severity of the surgery if it would be something necessary.

I would think a feeding tube would not be necessary for just surgery. You should know some of us went through radiation without a tube either.

You said....David goes in for his surgery to remove the cancer Jan 8th @ 5:30am. We're not sure if the Dr. is going to radiate prior to surgery - he said he would decide when the morning of the surgery.

I don't understand the part about radiating before surgery if the surgery is already planned for tomorrow?

Pegs have been discussed and debated forever on this site and basically us that didn't get one stands by that and the ones that did get one advocates getting one.

Philly

To PEG or not to PEG, that is the question that is a real HOT button on OCF. I ran afoul of it in my first few days here and almost dropped out of OCF figuring the last thing I needed was another flame throwing forum. Of course I brought it on myself with an evangelical zeal for no PEG, no way despite over 40 lb weight loss. David (not your David) summed it up very nicely in his post. For what it is worth, I totally identify with your David's feelings. For many posters here, a PEG was a God send that got them thru treatment. My expectations were in fact highly unreasonable, but worked out.
Prayers for the surgery going well

figuring the last thing I needed was another flame throwing forum.

Cute, I like that.

Good luck with the surgery. Agree, either you radiate long before sugery or go through the treatments post surgery which is what I did. Definitely don't see going with a peg until you find out if David is going to have to go through radiation. Again, hoping for the best tomorrow.

I believe what was meant was the decision to radiate was not known before surgery not that the radiation itself was going to happen before surgery.

Flame throwing indeed! I have the asbestos suit to show for it. (never mind the mesothelioma jokes)

Thank you all so much for your posts. This place has been a real godsend - removing a large portion of anxiety by helping me to understand what the next step is and what to expect. Thank you all.

David is in surgery now. The Dr. said it would be at least 3 hours - so about 3/4 of the way through as of right now. I'll post updates here when I get access to a computer - otherwise, you're welcome to follow my updates on Twitter (I can post those from my Blackberry

http://twitter.com/phillyrussell

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.