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Questions regarding feeding tube

Quark
Posts: 5
Joined: Sep 2013

Here we go.....

Firstly, very grateful to have found this site for information sharing....many thanks to all of you.  It really does help tremendously to have your input.  

My husband will soon start radiation treatments of 200 rads per session for 6 weeks.  He had 29 neck nodes removed, one of his tonsils and a large tumor removed from his tongue, replaced with a flap.  The doctor is advising the use of a feeding tube which he is very resistant to since he despised having a feeding tube while in the hospital.  Of course, nutrition is key here.  We did ask the doctor if it was possible to have it later rather than sooner (if need be) as he would like to just try it on his own.  What opinions do you have to offer on this?  Any point of view is welcome.

I am learning more and more each day which has proven a necessity.  I was surprised and saddened to learn that being WAY under informed by the medical professionals is much more the norm than not.  My husband and I both felt we had been completely blindsided by the surgery and recovery process without much preparation for it all. ...  Not that there was much of a choice, mind you, but it would have been a little easier, or at least better prepared if we had just had a clue what was coming at us.

I imagine that I will become a regular on this site since we are a bit on our own with all of this.  Our kids are across the country and we do try to spare them as much as possible too.  I will try to add a photo of us later.  It is nice to see who you're talking to.

Thanks in advance!

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

 

Quark,

Welcome to the H&N forum, so sorry your husband got the short straw (just kidding, I got one too).

To PEG or not to PEG?  Yes, you can most certainly wait to see if a PEG is needed.  Just remember through thick or thin (sore mouth, tongue and throat) he will have to consume all nourishment by mouth.  Kind of like normal, but so much more intense.

It is a quick and easy procedure for most and is nothing to be afraid of.  I had 2 PEGs myself, but managed to drink one meal a day throughout treatment.  In hind sight, I could have made it without a PEG, but then again I wouldn’t have had those wonderful afternoons with 2 cans of Jevity on fast drip. Some are much more fortunate than I was and some far worse.  It really is playing the odds whether to get one or not, but whatever you chose you will be alright.

I hope you both have an uneventful next few months.

Matt

 

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

The people here are very supportive, kind-hearted, and smart.....I'm glad you found us before rads have begun....

So.....the infamous feeding tube question....I was smiling when I wrote that.....we've had many discussions on feeding tubes...I've come to the conclusion that when it comes to feeding tubes, there is more than one way to skin the cat.  I had my feeding tube put in before I started treatment....however, I was 97 lbs, and they really didn't want to take the chance that I'd lose a bunch of weight.  I did not use my tube once during rads....but I had 3 adjuvent chemo's after rads were over, and I really needed my tube.

There are people here who have gone through treatment without one.....people who got one half way through....one person who got his on the last day of radiation.  If hubby wants to do a wait and see, then why not.....a couple of drawbacks is the PEG tube is inserted down the esphogus and when a person's mouth is already sore, it can get sorer....or it may be too swollen to even get the tube down.

I'm assuming (I know, bad thing to do)....but gonna do it anyway, that he had a nasal feeding tube while in the hospital?  A gastric tube is not at all the same....it hangs from the stomach, and most of us tucked them into our pants, or taped them to our stomachs....or for the girls stuffed them into our bras.  Not near the pain in the butt as the nasal tubes are.

You're right about nutrition and hydration.....he needs as much of each as he can get in each and every day....he also needs to swallow something every single day....water, milk, whatever....got to keep those swallow muscles working....would be a dirty damn shame to go through all this only to have to relearn how to swallow all over again.

p   

debbiejeanne's picture
debbiejeanne
Posts: 2224
Joined: Jan 2010

quark, welcome to the forum.  so glad u found it.  you will fine lots of friendly people with experience and good tips on how 2 best make it thru tx. 

get'n a feeding tube is not a big deal.  many here had it b4 tx started and some others after it started and some didn't have one at all.  it all depends on how ur husband does w/tx.  his mouth will most likely become very sore and he may net be able to swallow food, thus, feeding tube.  even f he gets the feeding tube it will b very important for him to drink water or something to keep his swallowig muscles working.  if he doesn't swallow everydy, he could lose his ability to swallow and not be able to get that ability back.  it is also extremely important for him 2 stay hydrated.  he needs 2 eat as much as he can while he is able as he will probably lose weight during tx.  come here w/any questions u may have.  you will always find people here r willing to help.  please keep us posted on his progress.

God bless u both,

dj

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi and welcome....

As P said, the PEG (gastric tube as opposed to the nasal feeding tube) question has been discussed ad nauseum and you'll find there are as many opinions as there are H&N patients. "Everyone is different" is a mantra you'll see often here and it applies to the PEG as well. Some can manage without and some need it, whether prior to treatment, during, or as in my case afterwards... like literally two hours after I rang the bell! I relied on it solely for about 4 weeks until I could take nourishment by mouth.

If indeed he does need one, the procedure is relatively painless...just sore for a few days. Nutrition and hydration are two of the key components in getting through the treatment so do what you have to do to maintain it. The third is pain management. It's best to treat the symptoms before they become an issue. 

Positive thoughts and prayers

"T"

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

My mother also has cancer in the throat, cheek, and roof of the mouth. The Doctor insisted that she have the tube inserted (before treatment begins), because many people had died of malnutrition from not having it. This could be a result of living in a very small town and not being able to get the tube insterted in a timely fashion. She just had it inserted today and hates it, but I am glad that she got it, because based upon what I have learned, she may need it at some point. So, perhaps it is better to be safe than sorry.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

It is important not to wait too long for the feeding tube.  I had mine put in, roughly three weeks after starting treatment, as I couldn't take in enough calories by mouth.  My surgery was quick and easy, and I was able to begin using the tube the same day.   A fellow patient in my area waited until a few weeks later in his treatment, and it proved impossible to intubate him for the quick surgery to install it. He required TPN nutrition through his port for the remainder of his treatment.  So, ok to wait a bit, but don't wait too long.

Ladylacy
Posts: 457
Joined: Apr 2012

I can honestly say that without the PEG tube when my husband started his treatment in 2010 for laryngeal cancer, he wouldn't be here today.  The PEG tube was inserted before radiation started and as the doctor explained if not needed could easily be removed.  Well it was needed because the radiation completely closed off his throat and his throat had to be reconstructed during his laryngectomy in 2011.  Fast forward to 2012 when he was diagnosed with a 2nd primary at the cervical of his esophagus.  Radiation again and once again a PEG tube was inserted, thank goodness.  He still has the feeding tube today and will have it until his time is up.

He takes care of his feeding tube himself and has no problems.  They have talked about replacing it but then on the other hand they say as long as he is having no problems with it, leave it alone.  He has had it now for 17 months.  The PEG tube is put in under sedation, down the esophagus then out thru the stomach wall.  You are sore for a day or two if everything is going right.  If not needed you just have to put water down in once a day to keep it open and to keep it from clogging up.  And if needed it is great to have.  Removal is quite easy too.

It is easier to have it inserted before radiation starts than during due to swelling that can occur. 

Wishing the best to you and your husband -- Sharon

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

Welcome to the family here on CSN; I will have to live using a PEG tube for the rest of my life; it’s not bad and you do get use to it. I think it is more of a thing people see as being restricted or just for sick people. I work full time and travel all over the country and sometimes outside of the US for business or on vacation. I did not use one during my treatment because I did not know too much about them and was just like your husband, but if I knew then what I know now I would have had it from the first day. I find that I can eat just about everything anyone else can eat all I need to do is to liquefy it and it is goes.

Wishing you the best

Hondo

Ingrid K's picture
Ingrid K
Posts: 809
Joined: Mar 2011

Tell your hubby NOT to fight the PEG.  Although everyone has an opinion about whether to get a feeding tube or not, remember that with tongue cancer....his tongue function will be more compromised than some of our peers with tonsil tumors.  You need your tongue to function in order to swallow.....and it will take a while for the "new" tongue to figure out how to work properly.

I know for a fact that having a PEG saved my life.  I had 75% of my tongue replaced with a forearm flap and it took several weeks for the tongue to  figure out how to push even water into the right position for swallowing.

But most important, PEG or no PEG, hubby must keep up the swallowing muscles....so even teeny teeny bits of water several times a day is a must.  Crushed ice worked the best for me.

Good Luck to you both and don't hesitate to ask any and all questions !

 

 

Quark
Posts: 5
Joined: Sep 2013

Thanks to all of you who responded.  It helps so much to have people talking to us who have been down the road before us.  I am hoping my husband will choose the PEG and I believe he is leaning that way now.  It seems a reasonable thing to do if nothing other than a sort of insurance , if you will, that should it happen that he cannot swallow enough on his own he will have the PEG as a back up.

thanks again, I'm sure I will be back soon with more questions.

Cheers

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

insurance!  When I finally was getting a good picture of what treatment was all about, I thought I didn't have much weight to lose...30 lbs would have sent me back to my 6th grade weight!  As it was, I lost 16 or 17 lbs with a tube....but still a far cry from what many people lose during treatment.

Once he gets it, people will come up with many ideas how to keep it close to the body (just letting it hang irritates it)....the guys have different stradegies than the gals...of course.

p

nick770's picture
nick770
Posts: 195
Joined: May 2012

+1 on the tube, i have had 2 now, and they both have been absoulute life savers. i was unable to eat or drink through and fter my treatments for quite sometime.

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Peg is a hot topic for sure.  I got through as many have without one. ALL my doctors lined up on the no PEG side.  Their viewpoint was it is better if you don't need it as it ensures your swallow function remain intact.  Placing it during treatment is common and comments are often made about it being harder to place during treatment I honestly can't recollect a member having any unusual side effects of having it placed. If the doctor recommend one pretty treatment ask why.  Just make an informed decision, not blindly following orders. And there are many reports about various discomforts about living with the PEG.  

Welcome to csn! 

jackflash22's picture
jackflash22
Posts: 208
Joined: Aug 2013

I  have just had the surgery for base tongue cancer and nodes had a neck dissection. I had a nose feeding tube in hospital as they are only for a few days but I'm having a PEG tube put in my stomach. Its just a minor op to place a short tube into the stomach from the outside and you feed yourself through it with liquid meals and water and medication. I have read all the articles and while having rad/chemo your throat feels as if your swallowing razor blades. I go for the easy option, why struggle in pain to try and get food down a painful throat when you can maintain your health and weight with a PEG, as soon as you can eat again it comes out easily (so i have read) Its advisable to take some liquid down your throat as well to keep your  'swallowing' in order. I put a pciture of myself before and after' dissection to show how quick you do recover, next week I start rads so wont be so perky after a few weeks but I SHALL get over it. If you want to look at my pic its titled '8 weeks on

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