Radiation without feeding tube
Hello all,
My radiologist at Sloan-Kettering is not recommending a feeding tube for my 30 rounds of tongue and neck treatment. Yet, I see so many here have either needed, or were advised to have one put in. Who went without it and can you tell me your experiences? I'm happy with the recommendation but worried about trouble eating.
Comments
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Feeding tube
Your question will have those that say you won't need one and those that say you will. There have been many discussions on this board regarding feeding tubes. The way it was put to my husband before he started radiation and chemo is that it would be easier to insert before treatment than during treatment and if not needed very easy to remove. Both his radiation and oncologist doctors recommended the feeding tube -- he didn't want one but agreed to have it. For my husband it was something that was very much needed before two weeks of radiation treatments were over. Radiation did a job on his throat which we didn't find out until he ended up having surgery. The radiation completely closed off the back of his throat. He had laryngeal cancer.
Everyone responds differently to treatment. The most important thing to do is to keep swallowing and to stay hydrated. After he had surgery within 6 weeks he was swallowing again but that didn't last long for him because he ended up with a second primary and had to undergo radiation and chemo again and was never able to swallow again and relied on his feeding tube for the remainder of his life. I also think the doctors were always concerned and wanted him to have the feeding tube because he was 6'4 and only weighed 150 which was normal for him. So he had no weight or body fat to lose.
Wishing you peace and comfort
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The PEG is a blessing AND a curse
After 2 weeks of radiation and chemo, my husband's mucositis was so bad he could not swallow or take anything by mouth, so it wasn't really a choice for us - he had to have it in order to survive. Perhaps for the others the choice is less clear cut.
It became a curse when he preferred to "hold onto it" for longer than necessary for fear of not getting enough calories and protein and gaining weight back after treatment is over. Also due to some scary choking episodes...he was afraid for a while to try things by mouth. We are 8 months out of treatment and the tube is finally coming out in the next two weeks. In retrospect, because of the side effects and the way my husband reacted to chemoradiation, we could not have done differently.
Barbara
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My husband had a PEG tube put
My husband had a PEG tube put in before radiation. You could always have one put in during treatment if you need one, but then that would stall your treatment for a few days. That is why our docs (at MD Anderson and U of Texas) said to put one in before treatment.
He didn't end up using the tube until half way through the third week of treatment. Even then, he didn't use the tube solely until the last 10 days or so of treatment. And he had the tube removed 6 weeks after treatment was over.
The tube was a necessity, as the end of treatment was really rough and my husband really could not eat by mouth at that point. But it is an individual decision. having the tube was a good thing to have just in case. As his doctors said, you don't want to be stuck on a weekend and not be able to eat or anything. Having the tube can save you.
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no feeding tube
My husband went through chemo and radiation without a feeding tube. His diagnosis was ssc of the piriform sinus with 2 lymph nodes affected, stage 4. His doctors thought it very important that he continue to swallow and though difficult, he did it and since treatment has maintained his swallowing function. He finished treatment in Oct. 2012.
It is a personal decision and everyone is different.
Wishing you the best.
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to PEG are not to PEG?
stevenpepe,
I had 2 PEG’s, 1 bad, 1 good, but I always managed to drink one meal a day without the PEG. Looking back I most likely could have made it without one.
Whatever path you chose to follow you need to consume 3k calories a day (estimate). That can be easy or that can be next to impossible.
PEG’s can be installed without too much fan fair, for most.
A PEG can be a blessing or a curse, how do you like to gamble?
Matt
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No PEG
My oncologists feel a PEG can cause some people to begin to rely on it at the first sign of pain, which causes them to lose more swallowing function. I had Erbitux and 33 sessions of IMRT for base of tongue cancer and did not have a feeding tube. It wasn't easy and I did need supplemental fluids to prevent dehydration a few times, but I am able to swallow as well as before. I would rely on your doctor's advice.
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Feeding tube or not...
First, let me say I did not have radiation. The Rad Dr came in and explained what they would do but due to my lungs, I did not have it. I did have an NG feeding tube but there was no choice as they removed my larynx and I was not allowed to swallow.
What you might consider is with having tongue surgery and all the radiation will be going to your tongue and throat, to consider the advice more from ones that had radiation where you are. Those who had radiation to the sinus area might not affect your ability in swallowing. Your tongue and larynx play a big part in swallowing.
Wish you the best in whatever you decide.
Bill
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To tube or not to tube
I opted not to have the tube for radiation and chemo. This probably wasn't a smart option as I lost 95 pounds during treatment. I did have the tube put in for surgery as I wouldn't be allowed anything by mouth for a period of time. If I had to do it over again, I would take the tube and use it when necessary taking as much by mouth as possible but when needed use the tube to supplement nutrition.
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Every patient is different
I did not have a tube when I went through treatment 18 yrs ago. My doctor at MDACC didn't think I needed it and that was good enough for me. However I lost a lot of weight and might would have healed faster if I would have had it. Fast forward 13 yrs and because of long term damage I had to have one put in. I end up with pneumonia from the surgery and was quite ill. My point is that while it is usually a safe procedure with a low complication rate there can be complcations. Your doctors understand the staging and location of your tumor and I would go with their medical opinion.
I wish you the best,
Meredith
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I would go with a feeding tube
i was diagnosed with stage IVa base of tongue cancer and was told by my oncologists that I would have one. Before it was inserted I did my research and found a piece that made the decision for me, a comment in a peer reviewed paper on survival rates that noted that before the wider use of feeding tubes, most head and neck cancer patients died due to nutriional issues and not from the disease.
I had mine inserted a week before rads started, and did not use it until the end of the second week, and kept trying to consume 'real' food. By the middle of the third week I was able to swallow water and liquids, but not take anything resembling food. One of the more difficult issues with radiation was that it took out my ability to taste anything and you may think that is a small issue, but you have no idea until you lose your ability to taste, how disgusting the feel of tasteless food can be.
my only downside to the tube? Keeping it in place. My doctor supplied me with a product called Spandage, it was a mesh tube that I cut to length and then wore like a tee-shirt that kept the tube in place.
It is, as my fellow warriors have said, your choice to make, but I would not have had a good result (now 4 years post diagnosis with little to no real issues) without the nutrition that the tube affored, especially for the 8 weeks post rads recovery period.
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Had 35 rounds and 6 chemo
Had 35 rounds and 6 chemo (Cisplatin) for a Stage IV tumor near my epiglottis back in early 2012. My rad onc recommended a PEG but I went without it. I had poundage to lose. I lost 40 lb in 6 weeks. Went from 190 to 150. Main problem is trying to get enough calorie intake during treatment. Your body really metabolizes during treatment. It is VERY easy to get dehydrated. I went in some weeks to the infusion room just to get a 1000ML bag of sodium chloride, which really works like a champ.
Taste is now pretty much back to normal and I have gained it all back.
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I opted out...
I had the requisite rounds (30)...the last two weeks of rads were tough but bearable. However, the aftermath (at least for me) was pretty awful. The burning in my throat and mouth was so bad that I could no longer drink Ensure and even water hurt. My weight dropped to 105 and I avoided the oncology nurse...just did not want that PEG. Eventually, the sores lessened and I was able to tolerate power drinks made with Ensure, Scandi and ice cream (I think each must have had 800 calories). Stayed on that for a about six weeks and then ever so slowly began taking tiny bites of tunafish salad, egg salad and cottage cheese. It was a very slow process. A year later my weight is okay (probably needed to knock off some pounds originally but what a way to do it, huh?). My advice would be to go with what your doctor recommends and you can always change your mind if things get too tough going forward.
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no tube
I completed 30 rounds of IMRT without a tube. Yes, it hurt to swallow. I used magic mouthwash, I had prescriptions for the sores, I had morphine, but most important is I had a mom who moved in to help care for my three young children and she would bring me water and milk and watch me drink it. I had protein shakes and high protein boost. Early on, I forced myself to eat overcooked pasta with every meal. It was soft enough I could get it down. I lost a lot of weight and at one point I almost had to have the tube, but in the end, my mom used the threat of the tube to get me to eat/drink when I didn't want to. My husband followed her lead and did the same. It can be done, but it isn't easy. If it is needed, your dr will make you get one later.
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About time
Proabably overdue for a PEG topic. I did not get a PEG nor was I advsied to get one early on. My doctors felt it was better to try without one as there was less potential for long term swallow issues. They also advised putting one in when needed was not any big deal. Some here are advised to PEG up early.
Over time, the main thing I learned was that each person's situation is unique and there are not standard answers to any of this. So, if you trust your medical team and they advise getting a PEG that is likely the better choice. Good luck.
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I vote YES
I could not have made it without mine. My cancer was next to my vocal cords and I stopped swallowing completely around week 5 of treatment. Not good. I just felt like I could not physically swallow not to mention the vomiting and throat pain. I guess you cant know ahead of time how you will tolerate treatment. My oncologist did not give me the choice. Of course I always had a choice but he said all his patients get one...end of story. So I did thank God. Oh and I happily took out my own tube after my 3 month scan. It was driving me crazy and I started eating again. Eating was HARD but I did it.
Karen
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Feeding Tube
Hi Steven, sorry you have to go through this. I had SCC at the base of my tounge. In April 2015 I had partial neck disection where the mass was removed from the base of my tongue along with lymph nodes and my tonsils. After the surgery, I had 30 rounds of radiation and 6 weeks worth of chemo (Cisplatin). I never had a food tube during this time. I was fortunate as I never got sick. I did struggle especially the last 3 weeks of radiation. I was down to consuming only 2-3 Boosts a day, but I made it through without a food tube.
The down side, is I am still not eating much. I can try almost anything, but there is just a lot that I just can't eat. Swallowing is difficult because of the loss of salivation and the surgery, especially breads, pizza and course meat including chicken. I weighed 300 lbs when I went in for surgery. This morning, I weighed 180 lbs....Not a bad result, because I had weight that I shouldn't have been carrying, but not the way you ever want to lose it!
The doctor was surprised that I made it through radiation and could still swallow. I did some Magic Mouthwash for a couple of weeks, but not all along. They felt that the surgery may have cut some nerves that didn't make it as painful for me. I chose to believe, I'm just that tough!!!
It's hard to say what to expect. Everyone is different and every condition is a little different. If you Dr recommends the tube, I say listen to them. Either way, be prepared for a couple of months that will be life shaping!
Best of Luck. Many people are here to lean on!
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Thank you all for the
Thank you all for the informative comments. Spoke with my chemo doc, as well, and he did not recommend the tube, either. Swallowing is the main issue and he assured me the nursing staff will help me through it with therapy/medications. For now, I will take their advice and see how bad it's truly going to be. This is something I am NOT looking forward to!
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Best of luck Steven!
We are all wishing you the best and hope you make it through with minimal complications. Hopefully you will not need the PEG, but if you do, there is no sense worrying about it - just follow your team's recommendations and you'll make it to the finish line.
Barb K. in Buffalo
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