• hello , I was told today that I would have to have a friggin feeding tube during treatment. sounds scary and dont know what to expect. help!

    Asked by clay on Wednesday, November 28, 2012

    hello , I was told today that I would have to have a friggin feeding tube during treatment. sounds scary and dont know what to expect. help!

    15 Answers from the Community

    15 answers
    • xxx19xxx's Avatar
      xxx19xxx

      HEY CLAY......IN MY CASE HERE IN FLORIDA THEY MENTIONED THE TUBE AT THE BEGINNING. I INQUIRED ABOUT IT AND SPOKE TO CANCER VICTIMS, AND IT HAPPENS THEY HAD PROBLEMS WITH THEM........EITHER FROM INFECTIONS, OR THAT THEY MOVE AROUND....I JUST THOUGHT I'D TRY AND GO WITHOUT IT, AND SO FAR I'M OK ....MY TREATMENTS WERE OVER ABOUT 4-5 WEEKS AGO....I AM ON LIQUIDS ONLY WHICH SUCKS....VERY BORING....IF YOU WANT TO, YOU COULD ALWAYS ADD THE TUBE AFTER YOU START TREATMENT.

      almost 5 years ago
    • FreeBird's Avatar
      FreeBird

      Hi Clay. I think that's the least of your worries. They just want to make sure you're still able to get nutrition into your body if you're unable to eat. You don't want to starve. So in the event you're not able to chew and swallow your food, instead of eating food like you normally do, you take the detour route through a tube that goes directly through your abdomen to your stomach. http://www.youtube.com/watch?v=yBzy3tHOps0 I don't have personal experience with it, but it doesn't look that awful compared to your other problems. I think they just want you to keep it clean so it doesn't get infected, and you use a nutritional formula to deliver nutrition through the tube if you can't eat. It looks like you do that either through a big syringe that you attach to the tube, or through a bag that you attach and hang. I know there are some people here at whatnext who have had the gastrostomy tube, so hopefully they will show up with their experiences. I would think the worst part about it is if you're not able to always eat the foods you like to eat. Good luck with your treatments.

      almost 5 years ago
    • planogirl60's Avatar
      planogirl60

      I had a feeding tube put in BEFORE treatment and I am very glad I did. I was unable to eat anything by mouth for over a month. If you get the feeding tube (which I would suggest) please try as hard as you can to get something down your throat every day. My throat shrunk so badly that after I was clear I had to have my throat stretched. The treatments are harsh, but saved my life. I'm an 8 year survivor. I dropped 52 pounds during treatment, even with the feeding tube. My procedure to put the tube in was done at the hospital under local anthesia. I remember very little of the procedure. It was a bit scary, but it's over quickly. Due to the weight loss the tube started leaking while I was in the hospital. The Doctor came in and without any drugs pulled out the old and quickly inserted a new one. Quick and pretty painless. When I was finally given the clear to have it totally removed went to his office and again he just pulled it out, bandaged up and sent home. I have a small indentation in my stomach, but it reminds me the tube saved my life. I know it all is scary right now, but this, you will be glad to have. The tubing is kept short and with clothes on no one can tell you have it unless you point it out to them. Hang in there.

      almost 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      When i had the Radical Neck Disection, they were going to put one in for me, before treatments. They said I wouldn't be able to eat. I was freaking out about it because I gag very easily. I fought them on it, finally just before going into surgery I was told they would decide while in surgery whether or not they thought I would need one based on how the surgery to take out the tonsil and nodes in my neck went. And if I needed, they would put it in exiting my belly.

      I woke up without it and was very pleased. Now, if I had known how sore my throat was going to be, and how hard it was going to be to swallow, I might have said go ahead.

      I made it without, but probably should have had it.

      Hope you do well either way you go.

      Greg P
      Team WhatNext

      almost 5 years ago
    • kenw's Avatar
      kenw

      I have had my "tube" in my abdomen for ~6 month now. I am convinced that it saved my life. If not for the nutrition that was passed thru the "tube", I would have literally starved to death (if the professionals would have left me to!). I had second degree burns from radiation on the exterior and, I am told, the interior of my throat. The interior looked like raw hamburger. There was no way that I was passing any nutrition orally during those months.
      PET came back Negative, biopsy next week, then the PEG (tube) and Port come out.
      Hang in there; it's an ugly trip but you'll make it thru.

      almost 5 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      I wonder if you did try the liquids only diet if not using the tube would be an option? Might need to sit down with a piece a paper and your oncologist and list the Pros & Cons of the tube and then make a decision based on that. Good Luck My Friend.

      almost 5 years ago
    • BoiseB's Avatar
      BoiseB

      I was fed solely by a tube for six months. Over the course of that time I had six tubes four nasal and two stomach tubes I will not tell you it was a piece of cake. But it was one of those things that was necessary for me to live. I had to be feed sixteen hours out of the twenty four so I carried the pump in a back pack to radiation and Chemo treatments. I did have to go to another city for surgery and prior to surgery the feedings were stepped-up. Getting the XXX thing through TSA was probably the worst nightmare I had to get all kinds of paperwork from my doctor.

      almost 5 years ago
    • Richardc's Avatar
      Richardc

      Clay, I was told by my doctor to get a feeding tube (just in case) at the beginning of my treatments. I was resistant, but reluctantly went along with it. I had no problems with the tube, and when it came time to use it, I was glad it was there. Most days, I went to work and just wore a t-shirt under my regular shirt so it wouldn't rub against the shirt. Make sure you go ahead and get a machine to provide the food automatically, whether you're awake or asleep.

      I found that trying to do it myself - so many cc's every two hours resulted in more weight loss than the doctor wanted and I had to set an alarm to wake up at night to provide the liquid food. We found out the machine was much easier!. Be sure to follow the care instructions for showering and cleaning to prevent an infection.

      I was so glad when we finally went to the machine.

      Don't know if you will need radiation, but I found out how claustrophobic I was after two treatments. I researched it online, and found out the doctors can put a hole in the mask to provide fresh air during radiation. This made a big difference. Also, the techs usually turned on a cd player in the background. I ended up bringing my own music as a distraction and to help me relax.

      When the doctor removes the tube, all I felt was a slight tug!

      almost 5 years ago
    • mac101467's Avatar
      mac101467

      Hi Clay. 1st let me say that I was scared as heck to have one put in. But without it, I would not be here. Before the tube, I dropped 15lbs in a few weeks and even after the tube, I still lost weight, but only because of chemo and radiation killing any hunger at all. Like others have noted about pros and cons, the best judge is ultimately yourself whether you want it or not. It isn't as bad as it sounds and at least when you ae feeling drained, you can just sit up in bed and take the feeding and rest without much effort put forth, therefore saving strength for when it is really needed. I only say that because when I was trying to eat or drink, it was so much work that I got tired too easily and not enough nurition to make a difference. If you wish to email back and forth to talk, any of us here would most likely listen if need be.
      Best of luck in whatever you dcide and before you know it, this is all a thing of the past. By the way, my treatments ended Oct. 2011 and I have issues eating, but I am eating and am still Cancer free. Yeah!

      almost 5 years ago
    • lady1's Avatar
      lady1

      I would talk to your medical team about your concerns. There are pros and cons and it is not always necessary for everyone- just depends on your condition and treatment plan etc... Ask your medical team what the standard of care is and what the evidence says about tubes, what are the pros, cons, are there any potential long term effects, what are the benefits etc.. Get a second opinion from a team that specializes in treating head and neck cancer (if you haven't already). Then make a decision after you have all of the information based on what you have learned and what you feel most comfortable with.

      over 4 years ago
    • xxx19xxx's Avatar
      xxx19xxx

      HI CLAY.......I HAD 33 RADIATION SESSIONS AND 7 CHEMO TREATMENTS AND MY MD'S TOLD ME TO GET A FEEDING TUBE AS WELL, BUT I REFUSED BECAUSE I SPOKE TO 5 OTHER PEOPLE WHO'VE HAD THEM AND THEY REPORTED WAYU TOO MANY PROBLEMS OF INFECTIONS, AND OTHER DISCOMFORTS..........I ALSO FIGURED 1 LESS OBJECT TO WORRY ABOUT WOULD BE NICE....IT WORKED OUT FINE...I'M STILL ON A LIQUID DIET BECAUSE THE RADIATION "FRIED" MY SALIVA GLANDS AND TASTE BUDS....BUT I DID GET AWAY WITHOUT HAVING THE XXX TUBE............MAYBE YOUR CASE IS DIFFERENT...I WISH YOU GOOD LUCK, EITHER WAY YOU GO.

      over 4 years ago
    • alscut12's Avatar
      alscut12

      Don't worry I had it. No pain. It will be only for a short time.

      almost 4 years ago
    • xxx19xxx's Avatar
      xxx19xxx

      HI,
      I HAD THE SAME DISEASE LAST YEAR AND WAS ALSO TOLD TO HAVE A FEEDING TUBE INSTALLED...........I REFUSED AND GOT THROUGH IT OK.......IF THEY HAD TOLD ME IT WAS "URGENT" OR SOME "EMERGENCY, THEN YES I WOULD HAVE GONE FOR IT. I JUST THOUGHT IT WOULD BE ONE LESS HEADACHE TO WORRY ABOUT. I HAD 33 RADIATIONS AND 7 CHEMOS....THE CANCER WAS GONE, BUT HAS NOW RETURNED IN MY LUNGS AND I WENT FOR 6 CHEMOS OUT OF 22..........................I WISH YOU THE BEST OF LUCK.

      almost 4 years ago
    • jimhaden's Avatar
      jimhaden

      I had a feeding tube from the day I had tongue surgery to remove tumor and while I didnt like it I know it helped me to keep my weight up.Had to becareful and remember to flush after every feeding. I was able to start swallowing about 2 months after surgery but then had to use the tube again for the last two weeks of radiation. I had 7 weeks of radiation daily so my throat and mouth were sore and I couldn't taste my food the last two weeks anyway. The worst part was getting it out. I called and asked when it could be removed .Doctor said come on in and we will yank it out. AND THAT IS WHAT THEY DID. I did not know that was how they would remove it .And boy does that ever wake you up. DR. Said take a deep breath and then wow that was when he pulled it out.

      over 3 years ago
    • brendahickle's Avatar
      brendahickle

      Hi Clay , I was feeling the same way you are. When they told me that I would be needing one ' I thought yea write not me ! " Well 8 yrs later I am very thankfull that I followed DR. orders. At first I would not use it . I did not like it ,it was ugly a I just flat was not going to use it!! Well about 55 pounds lighter and not feeling real well my DR. asked me how much I WAS EATING THRU MY TUBE . ' I THEN told him that I wasn't using it at all . HE THEN INFORMED ME THAT IF I DID NOTUSE IT THAT HE WOULD JUST PUT ME IN THE HOSPITAL AND FEED ME THERE. Well that day I went home ,layed on my bed and just looked at that feeding tube and looked, and looked . I tell you me and that tube became best friends !! I WAS NOT GOING TO THE HOSPITAL ! So for the next 4 yrs we got real close. But, you know the day I had it taken out. it was like pulling a pacifier out of a babys mouth ., it sounded just like that too!! So Clay just lay back on your bed when you get it put in and like it, love it like its your baby ! but make sure you eat because if you do not keep up your strength and your health they will put you in the hospital . ! GOD BLESS AND PLEASE KEEP ME POSTED

      over 2 years ago

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