I did not have a PEG tube during my surgery for 25% removal of tongue. The doctors are not recommending a PEG tube at this time, as we plan to start Radiation in two weeks.

In searching this site, I didn't see any specific cases of NOT using a PEG tube.

Has anyone been through Radiation without a PEG tube?

Thanks,

-Kyle

The quick answer is yes, but I am not one and would have ended up about 85 lbs. without one. Having concurrent chemo will increase the mouth sores. The need for a PEG has been debated endlessly on this forum, so a search for that term will take you to more opinions than you can read in one evening.

Whatever you decide, good luck to you and always remember that you WILL get through even the toughest days and then back to your life.

Hello Kyle

I went through radiation without a PEG and lost a lot of weight. I had tonsil cancer though, not like you with a large part of your tongue removed.

I gather from this board that most tongue cancer patients have them. Some have a nasal tube instead.

I send best wishes to you for the success of your treatment.
Love from Helen

Kyle,

I also went thru Tonsil without a PEG. It was difficult, lost 30+ lbs, had to be hydrated a few times, but was way ahead in recovery. It added to the anxiety and was freightening near the completion, but worked for me. My docs wouldn't treat without, but I managed to slip thru the crack. The Doc that was scheduled to put it in had to leave early that day...and I never got back to him.... Worst case you could always add it. Good luck and all my best.

Regards,
Rob J

Kyle
I had tongue cancer and a friend of mine, had it before me he had his whole tongue removed, he did not have peg, I had a choice so I did not take it. I lost over 100 lbs could not eat ended up in the hospital for starvation. I would say have one in place, just in case. according to my doctors about 10 % of the the people have the reaction I did to the radiation.
Good Luck

Kyle,

I'm a little hesitant to give you my "story" on this because I had tonsil cancer, not tongue cancer, and my experience appears to be very, very different from others. But you asked, so here it is.

The nurse recommended I get a PEG prior to radiation, but my RO said I should try without it and get it later if needed.

I opted to wait. I went through a big problem with being able to eat fairly soon after starting treatment, then got on a diet I could tolerate for 3 meals per day (Boost Plus and egg-beaters) and which gave me about 2700 calories per day.

I ended up taking steroids (unrelated to eating issues), used the magic mouthwash at meals, and took a codeine-tylonol syrup, all of which I believe helped my abilty to eat. I also drank a lot of water and some tea.

I lost very little weight.

You can see the other very bad experiences above. In light of all the bad experiences, it is worth another discussion with your doctor prior to making a final decision.

Best wishes,

Chris

Rob survived for nine days of radiotherapy,and then had to go in and have a peg tube.He lost 30 lbs and could only sip water prior to his tube going in.For him taking away the worry of not being able to eat and at times drink has been the best.He also gets all his meds in his tube which is great.He reacted badly to the radiotherapy very quickly.Maybe you can wait and see how it goes?

Kyle,
I too had tonsil cancer and am now in my 4th week of radiation without a peg tube. I declined the offer and told them I will have 1 more surgery and that is to remove the port in my chest. So far I have only lost 5 pounds and am still eating. So go with your gut on this. If you feel you can do it without a peg try it. Worse case is they stop the rads for a couple of days and put one in. Good luck!!!

Kyle, I'm another who went through 6 weeks of rad without a PEG. It got tough towards the end, but I managed to get through with less than 10 lbs lost weight. I lost the ability (and the will) to eat anything solid in week 2, and it was 6 weeks post treatment before I could really eat anything solid afterwards.

Tough, yes. It can be done though. For me, It was a reluctance to go back to a tube after having one during surgery. I hated it enough then to be determined to get though Rad without one
Wayne

Kyle,

Yes, this is your call but going through treatment is hard enough. The peg is there for a reason, to help you & give you a way for nutrition and liquids. You do not want to get dehydrated.

How these other people got through it, is beyond me.?? I take my hate off to them.

I had one and I am so glad I did. I had it for 9 months, until I could show I could eat and not loose weight.

Take care and God Bless
Will be thinking of you as you go through your treatment.

Diane