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

Kyle,

I had tongue cancer and did not have a PEG tube (this was 18 years ago and it wasn't even presented as an option). As many others have said, it's really tough to keep eating enough, especially during the latter stages of radiation. My weight went from around 130 to 112 or so, even though I was VERY determined to keep my intake at a fairly high level.

You can't know for certain how badly your body will react to treatment -- as you can see from the many posts on this site, there's a pretty wide range of responses. I would suggest that, if you don't start with a PEG, you at least have a contingency plan in the event you can't get all the way through without it.

Cathy

Kyle, if you do decide to get a PEG, now or later, it is not a big deal. Outpatient, takes about 30 minutes, then another 30 for you to get clear headed enough to go home. Just a little sore for a couple of days, and daily swab around the entry point. Does not show under clothes, smell, or leak. Creative use of plastic wrap enables one to shower easily. A few people have reported negative experiences, but I believe by and large, it is pretty much a cake walk, as it was for me. Good luck!

Hello Kyle,

You may want to look in the "Introduce Yourself" section under the topic I posted titled "New Member-Need Support". There are several helpful replies there regarding the feeding tube issue.

Stay strong,
Sue

Hi Kyle,
The PEG tube issue was never really discussed with my MO or RO. My MO said he didn't think I needed it and I was to ignorant to question him. Apparently, I didn't do near as much pre-surgery and pre- treatment research as most of you. However, I think I am one of the few it worked out OK for. I never had a problem eating or swallowing. I maintained my exact wait throughout and only had 1 sore throughout the whole process. I was fatigued and lost my taste after 3 weeks but, that was it. I wish I knew what my secret was. I guess everyone is just different.

I was told that if I just had radiation, I could decide to not have a PEG but, had I been treated at Dana Farber, they required it for rad and chemo combined (as mouth pain and swallowing often are much worse). I know it isn't entirely true, but many people on this board who didn't have a PEG also didn't have concurrent chemo with their rad. You don't say if you are having chemo, Kyle, but if you are not I would think it much more liekly you can make it through the entire treatment without it.

Nelie

I didn't have a PEG, but I had tonsil cancer. I only lost about 10 lbs during radiation. My nurse recommended it siting patients do much better with it, but my oncologist didn't think I would need one. I did have a problem with Ethyol and I contribute that to not drinking enough water. I should have gone to ER, but I was too sick (104 temp, vomitting...). Without a PEG my WHOLE day was spent trying to figure out what I could eat or drink next. I'd stare at my drink for an hour and then take 3 hours to drink it. As soon as I finished, I tried something else. It was very time consuming to stay on top of nutrition and hydration. Overall, I was very lucky had little problems with the whole course of treatment. Of course, 2.5 weeks out of tx and I'm still staring at my drink from 2 hours ago.

Kyle, hello and good luck for starters. I too had tonsil cancer. I made it through without a peg. I had rad and chemo together. I was about 210 and pretty muscular I am now about 175 and can only lift what my wife lifted at the gym yesterday. I had a couple of struggles with nausea that had us concerned. Very rapid weight loss. I also had to have fluids the last two weeks of treatment and the week following. I have not had a solid meal in 2 1/2 months. I have started to eat small servings of soups at the end of the day. I actually am feeling pretty good though, and my docs are extremely pleased. That being said there was a point that had I not had a break in the nausea I would have probably had to get the peg during treatment. That was scarier for me for the obvious reasons of possible infections if your blood counts are low. I was lucky and maybe new meds are helping some of us make it without pegs. I don't know but I think if I had to do it over I would get the tube just in case I hade to use it. If I didn't have to use it I guess they would just remove it afterwards. I'm glad I made it but about mid way through I was extremely concerned. I think what made me not get one was that I had an iron stomach. I don't think I had ever been nauseous. When I got that way I was miserable and had absolutely no desire to eat. Thank goodness for Zofran. I took it and My nausea disappeared. If I had the tendancy to be nauseous I would absolutely get one. Good luck with your decision.

More interesting "stuff" about the differences in tx. John had a peg placed during initial surgery [athe Doc did not ask- just told us it would be done] and rad. only was part of the 1st tx. That peg was yanked about 6 weeks after rad ended. The 2nd time, the peg was again inserted during major surgery and this time chemo only was the tx. I thought the statement above about not needing a peg if you were only having radiation very interesting because rad. was harder on John than the chemo was. Amy in the Ozarks

Amy, I see people at the rad ctr at Emory that look like they are sick as h***but they are there every day. I have spoken quite a bit to this one person who's treatment has gone similar to mine and the only time he used his peg was after his chemo. To look at this guy you would think he is ready to drop but he is far from it.

Kyle I guess the bottom line is go with your gut. You know what kind of stamina and grit you have. If you feel not having a peg will impede your treatments than get it and don't look back. I am now done with ALL my treatments and I wish you and everybody still in treatments the best!!
Also let me add this, you will pull strength from people you are in treatment with. All it will take is starting a conversation and things will be said that you will find the strength.
good luck and GOD bless.

Amy, I agree rad by itself is tougher than chemo by itself but I think it's when you have rad and chemo together, though, that research shows almost everyone has problems with swallowing.

Nelie