Really ambivalent about the gastrostomy tube tomorrow

PEG this

PJ,

I agree with Candi’s assessment, you can wait, and it is a simple procedure.  Many times when people wait, they are bordering on hurry-up and “PEG me” so I can get some nutrition.  Having one does make meal time easy (either gravity drip or syringe).  If you chose to go without, you have to prepare yourself for some swallowing and eating discipline (you need lots of calories and nutrition, easily).

Looking back, I had 2 PEG’s and always managed to drink one meal a day, the rest by PEG.  Drinking was a challenge, but gravity drip a couple a cans of Jevity was easy.

 There are a number of full time PEG user’s on the H&N forum which do everything you talk about and more.  Life doesn’t end with a PEG.

Remember, drink lots of water and stay hydrated.

Whatever decision you make, you will make it through this and come out the other side with fewer (more manageable) burdens.

Matt

PJ

During my husband's first round of radiation and chemo, we were told that he needed to have a feeding tube inserted.  Simple procedure and easy to remove if not needed.  We certainly were glad it was done before radiation started as radiation closed off the back of his throat, something we didn't know until he had a laryngectomy.  Of course, we knew he couldn't swallow and that something was wrong.  6 weeks after surgery and a swallow test the feeding tube was removed without any problems.  But now, after a second round of radiation he is on a feeding tube for the rest of his life.  That has happened to several that I have read about.

Just remember easier to insert before radiation than during and easy to remove if not needed.  And remember that everyone is different and react differently to treatment.  You may not have any problems and find the feeding tube is not necessary but at least you will be prepared if it is.

Wishing you the best -- Sharon

 

I had to

get one with just SIX treatments of 30 left to go.  I was losing too much weight and could not keep ANYTHING down at that point.  I went 7 days without nutrition because I would vomit it back up...water, soup, smoothies, Ensures...everything.  I was dehydrated and malnourished.  I was TERRIFIED and didn't want to need one, but thank the Lord I had it.  It saved my life.  It was a simple outpatient procedure and I was using it the next day.  24 hours later I felt like a new person!  If you can get by and not have to use it, that is great, I just had no other choice.  

Ruben opt'd for the tube

Ruben was given a choice of tube or no tube. The 'experts' didn't want him to get it; the acutal treating physicians advised to get it. He opt'd to get the tube, and thank goodness he did, I have no doubt it was one of the procedures that saved his life. It was a simple outpatient procedure. He had some discomfort for about a week after, but then adjusted.

Better to get on before treatment, then to wait until you need it. And remember, you don't HAVE to use it.

Take care. God Bless.

Jude (and Ruben)

PJ47 said:

Decided to pospone the feeding tube for 2 weeks

Since I do not have my radiation schedule yet (they keep saying they are working on my dosing and plan),  I have decided to wait for 2 more weeks as I will have misery for at least 2 months.  Yeah, no surgery/anesthesia to recover from for 2 more weeks!  The laproscopic procedure is cutting(small cuts) through the abdomen, filling it up with co2 then stitching the stomach secure to the abdominal wall.  It is a bit more cutting and pain than some of the other methods.   I chose not to have it done through the endoscope with the "pull" method as there is about a 10% chance of of the cancer "seeding" in the stomach and that did not sound like a good thing to me.  Anyone ever hear of that?  

I am thin enough and could manage another 10 lbs but do not need to loose it so I guess it is the best course. 

Thank allyall for your suggestions and experiences,

PJ

That's a new one on me....

nobody ever said anything about "seeding the stomach" to me....and I don't recall anyone on here every mentioning that....

I was 97 lbs when I started treatment, and got down to 81 by the end....weight loss wise....16 lbs....I did pretty darn good....but still ended up WAAAAY skinny.  If you start losing weight quickly once treatment is started, there's nothing saying you can't get the tube then....

p

Sounds like we had the same treatment

Hi. I was stage III tonsil and had TORS and neck dissection July 2013.  I had reduced rads to left side and minimal to right side.  The surgeon said I had clear margins and thought I could get away without rads.  This was voted down by cancer board who said since 1 lymph node was involved I should get rads. I was T1N1M0 also said I didn't need chemo either.  I opted for the feeding tube because of the stories from other survivors on this web site. I was about 10 pounds overweight but I had read that survival from cancer was affected by the amount of weight that you loose during treatment and I was afraid of major weight loss. I didn't get my tube until the 3rd week of radiation.  I think I would have died without it. It was a life line.  I didn't have a lot of pain during radiation, (I kept up with my pain meds), but everything tasted horrible and I could not eat. I only drank water by mouth to practice my "swallowing" but even that was torture. The tube allowed me to keep my weight up without having the stress of forcing down food.  I really could not eat for 3 or 4 months. After that I started with liquids and soft foods and now can eat almost everything. I have not  heard about "seeding" and none of the doctors mentioned this to me.  I wonder if it is that easy to "seed" by scrapping the throat then I wonder if cancer could "seed" by eating?    Just a thought. Not sure why threading the tube down would be much different then swallowing a bunch of food??  iF you ask the Dr. this let me know what he says. I am curious.