I am newly diagonised with Tonsil Cancer that has gone into my Throat - T2 Stage III. Had surgery and removed 80%. Just spoke with a Radiation Oncologist today. I'm told I should plan for a feeding tube. Is that standard? Is it a painful process to get one and to live with one? Quite an eye opener of a day today...

Some ROs believe everyone should get a feeding tube pre treatment. Others believe that most people do not need a feeding tube (or that people can get one inserted during treatment if it becomes necessary). My RO was in the second camp and I made it through without a feeding tube, although it was tough and I lost 50lbs. I'm glad I made it through without a feeding tube as I credit the requirement to keep swallowing with allowing me to eat normal food as quickly as I did post treatment.

If you do get a feeding tube, make sure you eat and drink by mouth for as long as possible even though it will be painful. If you do start using the tube (some end up not needing it), make sure that you are still swallowing water or liquids daily to keep your swallowing muscles working. Some people have issues with swallowing post treatment, which can come from lack of use/atrophy, radiation damage or other factors. Continuing to use the muscles and doing swallowing and stretching exercises should help reduce the likelihood of problems.

Welcome to OCF!

For some patients they will need a feeding tube due to the fact their eating ability will be compromised for weeks. Other will need it to get thru radiation. This can be a very individual thing.

Having a feeding tube can be an adjustment. But once its there you can easily adapt and get used to living with one. Ask for a pump so you can let it run overnight while you are sleeping. It will help you to take in enough calories and hydration.

As far as the surgery goes, its not that bad. The first couple days after having it installed, you will be sore. When you have a tube, be cautious about lifting anything heavier than 15-20 pounds. We recently discussed swimming with a feeding tube, in some instances it is ok. If you need help with it please dont hesitate to speak up and we will help you.

Best wishes!

I have some (very) minor swallowing issues and I did not have a feeding tube. Almost certain my issues would be worse if I hada tube from atrophy. I know several who had a tube and have little or no issues. I guess the bottom line is to get through treatment in the best shape possible whatever it takes. If I was advising a member of my family I would urge them to try without the tube unless there was a medical reason not to.

Right now is cream gravy, ice cream and chocolate sauce. Every pound you pack on now is wiggle room later.

Good luck!!

I had two feeding tubes, which I used on and off during several treatments, recovery since 2009. My current one was in since 2010. Had the first yanked out, and a month later had a recurrence, so needed one again due to an already compromised moth, throat. Actually, my first was put in without my knowledge while in or after ICU, I forget, and was just because of chemo, which can effect your mouth more acutely with mucocits, infections in several days, not like radiation. I can eat everything after not needing a tube anymore, steak, pork, hamburger, pizza, most everything else, but it tends to be fatter cuts of meat, sauces, of with butter. I really don't think about it, knowing my taste, swallowing, and cooking capabilities. Each case is different, extent of surgery, amount of radiation, and if bilaterally or ipsilateral, location of radiation, radiation dosage to salivary glands, medical condition, dental health, comorbidities for the doctor to suggest. Another factor is pain, which you may have more with no tube, can effect healing, but that can be managed with prescriptions, but maybe a higher dosage.

Having a tube placed during treatment also runs risks from surgery itself, and possible risk of infection due to a lowered immune system, and stoppage of treatment for a day or two, which is not really good either. Some doctors may rather put in nasal tube in if it's less than six weeks or so, and the trend now is no peg. Sounds like the old thought with exercise, "no pain, go gain" lol.

We call this discussion the PEG Wars and it has been going on ever since this site was started. Some swear by the PEG and others swear against it. Some RO's actually "make" you get one before they will treat you and some, like mine at Moffitt, a Comprehensive Cancer Center, left that decision up to me. The problem of this Tx is the radiation makes it very painful for most to swallow. You also will quickly lose your taste so that doesn't help. If you add chemo it can make things worse. For most, we don't really start to feel the pain until appx the 4th to 5th week of rad and it usually doesn't subside until a few weeks POST Tx so you potentially have a 7 week window of swallowing problems. If you get the PEG they usually want to surgically install it before your Tx begins whether or not you ever end up needing it. Even if you do get the PEG you are well advised to NOT use it until absolutely necessary since your swallowing muscles can quickly forget their function when not used. Many end up lifetime dependent on the PEG even though they are cancer free and pain free. A huge drawback IMO but without a bypass feeding method many getting this Tx would not survive. There is another alternative to the PEG and that is the Nasal Tube. I didn't get the PEG and I didn't need help until my 2nd week POST Tx and my docs inserted a tube up thru my nose into my stomach in about 1 minute. I had it for 2 weeks and pulled out at home myself. It really really made a huge difference in my recovery but I'm glad I didn't opt for the PEG.

It's an emotional subject for many. It was for me. I initially wanted one as a precaution but my team told me otherwise. I made it through treatment without one but only by a couple of hours as I was in surgery getting one two hours after I rang the bell.

I lost over 10lbs the last week of treatment (35lbs during treatment and a total of 60lbs from diagnosis/surgeries/treatment) and was unable to eat and barely able to drink. For the 1st 3 weeks post treatment I took 99% of my nutrition and hydration through the tube. I'm down to about 80% now and eating a solid food meal 1-2 times a day and hydrating totally by mouth now. I started eating solid foods over the Memorial Day weekend.

As much as I didn't want it, I'm glad I have it. The procedure was easy and other than some soreness for a couple of days, painless too. It went in on a Wednesday afternoon and I was using it Friday morning.

"T"

Hi there... This is definitely a hot topic. I was told I had to have one. I did get it and couldn't use it - made me vomit every time I tried - my body didn't agree with the formulas they gave me - so I did without. It wasn't fun but I could force myself to get enough nutrition so that I did not lose copious amounts of weight. I lost a total of 22 lbs. toward the end when things were painful I chugged boost and water several times a day. This maintained my swallowing reflex and nutrition. I finished radiation on the 4th of may, had my tube removed the 19th as I wasn't using it and was maintaining my weight.

Being malnourished and dehydrated has a direct impact on healing and overall health and how you get through the treatments. Having a caregiver who has to force you and argue with you to eat something (and make no mistake you need calories and a certain amount of protein a day) that makes a horrible experience even worse.

Radiation even for those of us who did okay getting through it (it really is horrendous - seriously - drooling, burns, extreme pain, sensitivity to spice, and temperature, no taste, metallic taste etc - when I would swallow it felt like acid hitting the back of my throat) is brutal.

So this said, how are you with pain? A feeding tube is meant to be a support to you during an extremely painful treatment. The downfall is - being human, when things get painful we revert to the easiest method possible... in this case a feeding tube helps you avoid the pain. However, relying on it solely isn't a good thing, as it can lead to atrophy of the swallowing muscles, and possible permanent loss of the ability to swallow and a permanent peg. If you think you can suck up the pain and get enough nutrition and fluids to keep the weight loss to a minimum, then go without but have a back up plan in place ( a nasogastric tube can be put in when things are at their worst and is a temporary measure though it does look funny taped to your face and dangling there, but at that point the way you look will be the least of your concerns )

If you think you will need some help as you are sensitive to pain then maybe go for the tube, but remember to swallow, even if it is just small sips of water etc... you must do that and swallowing exercises. And even if it's placed, flush it and maybe use it for your meds - but put off using it for as long as you possibly can.

it is eye opening . but you will get through it.

Oh and placement is usually done under a mild anaesthetic, and guided by an ultrasound. It's a bit uncomfortable for a day or two (depending on you pain tolerance) but eventually you get used to it. It doesn't impede everyday life really, just tape it into place, flush it and no baths. take care.

best of luck.

I commend everyone here for their stiff upper lip and with grace maintaining a civil discussion on the topic of PEG, at least this go around. I just barely escaped from the CSN forum room where I set a blaze that was a 10 engine fire fight; I think it is still smoldering over there.

What I offered there and do here, assuming everyone continues to play nice is to assemble some sort of Dummies guide to PEG, specifically just list all the major discussion and decision points and offer some short and condensed rationale for why that criteria is in the guide and generally what the pro/con issue is.

I do not have a long deep history but in all the researching on PEG I did I do not recollect something like this guide that would objectively cover all the major points in a short yet thorough guide.

I've heard all the arguments, trust me. Yes, it is s complex and emotional subject. Yes, many factors are predestined and not alterable through research but still nice to know why there is such common sense to get one or not. Some factors are not black and white so you sort of need to weight your own situation. It is not a decision guide, just an information guide to bring the details of the subject into the light as objectively as possible.

What do you think? I really would like to post my draft and get more input, but only if you don't gut and roast me before dinner time. LOL

Your opening statement made me laugh..10 engine fire fight and all. It's ok with me to post your draft, if that matters lol. Like some with a peg, I have dislike for anxiety meds to cope with treatment. Another can of worms opened lol. Bring it on Don Foo, we can be civil about it.