Here's how the logical argument goes:

G-Tube/PEG
PLUS
1) Fairly painless annoyance to have.
2) Cheap insurance to minimize dehydration and malnutrition
3) Serves as an alternate complimentary way to get food and drink down.
4) Allows for BD (Blenderized Drinks) meals that provide really yummy food.

MINUS
1) Dehydration and malnutrition will have you at the clinic or hospital in a blink
2) May become reliant on it and loss swallow function which is hard to regain
3) Most all canned formulas do not necessarily offer the best balance of nutrition
4) If your weight starts dropping, you are not in the best of heath so needing a PEG later is not the preferred time to get one.

feel free to add .... or hit > NEXT lol

don

Here is my take. I was 43 in very good shape, runner, no smoke. I thought I could just live through the pain. Well that ain't what happened.

It is not just pain, I also feel sick, I had no appetite, everything made me gag, and I was in chemo fog mentally.

For me eating was just not possible. When it was really bad, I gravity fed slowly just to keep what I could get in to stay down. I still lost 25 lbs.

For me it was either the PEG, Hospital, Both or Worse.


My recommendations are the HD 5 Step plan:

1) Get it and don't use it.
2) Then use it as little as possible
3) Then use it as much as possible
4) Then back to as little as possible.
5) Then get that thing out of your belly.

Step 4 is going to hurt.
Step 5 hurts too, but only for 10 seconds.

Shelby,
I also had a glossectomy (lost 75% of my tongue)....one thing not yet mentioned is that with your "new" tongue, you will have to work up to being able to swallow things, because your remaining "old" tongue will have to become stronger in order to push the food down....
I never got dehydrated as we used the tube for water also....it would be a shame to survive the cancer and then starve to death.
My PEG saved my life....and it's just a tiny little hole by the way...not a huge scar.

Shelby

Sometimes "logic" works better for robots than real living people. In rereading all these post on your original question, I realize it's just a milder version of the PEG wars rather than tailored to your needs.
Everybody here, whether pro-Peg or Pro-swallowing naturally, will agree that you will not have a noticeable scar from the PEG.
Trust me, that little stoma is constantly trying to close. When you have the Peg taken out, it will amaze you how fast it will close up and then heal. You will have a cute dimple, not a nasty scar. Even after almost 4 years, my stoma keeps trying to close around the g tube which is a problem but not one you will have to deal with.
As everyone here basically says, it takes a superhuman effort not to get a PEG and do great, so you better have a super reason to struggle through it. I did, you do not sound like you do, nor do the majority of cancer patients.
Since your main concern is unfounded (scar), my vote is that you get the PEG.
Charm

One had to consider other aspects besides inner strength. Each person's response to treatment is different, including current or past surgeries, co-morbities, underlying illness, weight loss & eating ability at diagnosis, radiation dosage, type, the radiation field, structure that is radiated, if done bilaterally, destruction of parotid gland, if having concurrent chemo, and type of chemo that impacts wether a person may need a peg. Sometimes things are out of our control, no matter what we say, do or think.

In my case, my initial induction chemo reaction was worse than all my subsequent radiation and chemo treatments, including surgeries, all combined for the past three years, which was all a walk in the park in comparison to what I went through for the six month's, so that impacted my needed a peg tube during hospitization, and in the future for any treatments due to the comorbitities.

Shelby, we are in a similar spot as you. My husband has finished 4 of 7 weekly infusions and about 20 rads. He's getting Erbitux rather than standard chemo, so nausea has never been an issue (of the friends I've seen get chemo, they nearly all dealt with nausea and more, even with zofran). The radiation is burning his mouth so badly. Up til today he could at least tolerate a milkshake (made with Boost). Today he couldn't even do that. In addition to lidocaine/"magic mouthwash" he's tried Episil (expensive and no relief, Rx), swishing with almond oil (like olive oil, but made of almonds, worked at first, not now) and alternating ibuprofen and Tylenol. Vicodin doesn't even help. Tonight we got an Rx of morphine. Hoping it helps.

We're looking into ups and downs of tubes. Bottom line is if he can't eat, he needs the tube. He's a tough guy with pain. He once cracked 3 ribs and hurt other areas in a motorcycle accident and didn't see a doctor for nearly 2 days. So, I know this is really bad pain. I keep reminding him the other option is death. The cancer caused very little pain, but we know eventually would have killed him. So, we have to figure out how to get him through this. He works full time and I'm a homeschool mom (with various health issues and surgery on March 20), so we need him to stay as well as possible.

Anyway, just wanted to let you know we're in the same boat. And to tell you I love your name. Our 3rd great niece, 10 mos. old, is Shelby!

Keep us all posted on what you decide!

Hi Shelby! Your case sounds very similar to mine... I was diagnosed young, stage 3, non-HPV, oral tongue, tx radiation and chemo. I didn't get on a feeding tube, my doctor thought that given my age and relative health I could get by without it, and avoid some of the complications feeding tubes can cause later on. It was difficult, especially the first couple weeks after treatment, but I got through it and had no problem eating solid food again once the mouth sores went down.
In my opinion, I think having the cancer on your oral tongue as opposed to BOT may be a little easier to stay off the tube, since the radiation is really targeted more in your mouth (opposed to your throat), and therefore it is a little easier to numb your mouth before eating than it would be your throat. My throat didn't get really sore until the end. If you stay off the tube, though, you will have to get used to drinking Ensure/Boost, as that will be pretty much the only thing you will be able to eat for a while. I HATED them, which was my biggest problem with weight loss

Shelby, I was just thinking of you. My husband has read this, too, and we've both been wondering how you are doing. Hope all is well.

This is my husband's last week of treatment (hopefully) and, of all things, he is now going to get a PEG. He did so well for such a long time, but now has dropped 27 pounds and we know that besides this week he has at least 4-8 weeks before he can get start beginning to eat "normally". He's exhausted. He's working 4 days/week 8 hrs./day (he takes chemo day off). So, Monday morning we'll be at the hospital. I'm hoping this will give him the nutrition he needs & that he'll be able to keep eating a few foods orally so he can keep swallowing. He is still drinking water, so liquid swallowing is good. Just want him to be able to swallow solids, too.