Radiation without feeding tube

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

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.

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

Mine insisted on having one put in. I am glad he did. I didn't need until the end. I continued swallowing both water and small amounts of food. But the nutrition i was able to get with the tube made all the difference.

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.

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.

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.

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.

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!

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