M, You took my comment exactly as I meant it. Please do not be concerned about this debate thing.

For some reason, even if I stay out of this debate I have the ability to piss people off.

Why this PEG subject is so provoking I will never understand. It has to be in the world of Sigmund Freud. The debate has been so strong that we now have several forum members that will not dare identify that they did RT without a PEG. I have resigned myself to believe if someone new comes to this site they are going to be told that a PEG is the only way. There is very limited interest among most here to consider the impact of this one-sided opinion. I really hate to say this but, for this one subject, I am happy I did not find this site prior to my treatments. If I had, I would have had yet another thing to freak out about. It was 2 years out before I found OCF and never knew about PEG feeding until then. My RO never mentioned it and I trust he knew what he was doing.

Gary has just done an outstanding job of putting plaster over this PEG issue but I am unimpressed by the lack of interest, among others, in posting neutral information and balanced views on this subject.

I have NEVER pushed for people to refuse getting a PEG. I ASK that you all not push people into getting them! Gary has said it well this is a matter for the patient and doctor. Letting people know that they have options is what we should be doing. If someone needs or wants a PEG more power to them. If someone really wants not to have a PEG they should know, by what they read here, that it is possible to get by without one.

Mark, you really speak my mind. I don't quite understand why patients who have PEG or their caregivers feel so defensive and sometimes offensive when they come across posts from others who have experience without a feeding tube.Like you, I never told people not to use one if they have the need to and I don't think I have done anything wrong by sharing my experience without a tube. I dare to speak up here because I don't want this subject to be of a one-sided opinion. I always think that my role here is to share what I have gone through and as a 5-year survivor from a stage 4B cancer, I think my participation can give some, if any, encouragement to members here.I have never questioned myself whether I am qualified to give response to a certain thread but I have learnt to speak much more cautiously in order not to create uneasy feelings from others.


Karen

I am going to try to respond to Brian's post, Mark's post and Gary's post in as clear AND unprejudicial manner as I can-based on our personal experience..*** To summerize what follows: Peg tubes are a way to guarantee nutrition and hydration during treatment. SOME PEOPLE may NOT need them. If not inserted at the beginning of treatment, some may find additional hospitalization is necessary. Each individual responds to treatment differently.A CLEAR UNDERSTANDING OF YOUR TREATMENT AND POSSIBLE SIDE EFFECTS IS NECESSARY TO MAKE THIS DECISION ***
Before surgery #1.John's surgeon NEVER gave him a choice whether to "peg or not peg" At our presurgery meeting, Dr. S. explained that he would be doing a bilateral neck dissection,removal of all but 5 upper teeth, floor of mouth tumor removal, removal of some of the tongue and the insertion of a peg tube. End of discussion. In looking back over our journal after the 1st surgery and rad tx., if John had NOT had the peg, he would have spent many days in the hospital being fed and hydrated, at additional stain to him and me, and additional cost to everyone. 46 days after his last rad tx. he had the peg removed and tried to maintain and boost his weight by mouth. When the 2nd cancer started growing, 4 months after rad. tx, the pain in John's mouth and throat shut down the little amount of food he had been able to take by mouth and he began to lose alot of weight. I need to reiterate here that my husband is not a wimp or a complainer. The 2nd surgery included more neck dissection, a titanium jaw with free flap, a trach and a new peg tube. At this point, his only way of getting nutrition is the peg. The gunk in his mouth and throat seem insurmountable. We have tried everything on this forum to cut it-to no avail and when he tries something by mouth it just gets worse. So for now, it is either the peg or the hospital. Amy

Well thank you Mark, but it was Eileen that said congrats for doing it without a PEG. I figured they had you pegged wrong (no pun intended - well maybe a little ;-)

EVERYTHING that could possibly be said about a PEG has been said - probably 20 times or more since I have been on the board. If you do a search on PEG you will find 15 pages of posts to wander through and that's the maximum amount (over 300) that you can search. Some of us just get tired of hearing or saying the same old stuff over and over so we can get a little testy sometimes. It's like the definition of insanity - "doing the same thing over and over and expecting a different outcome". Ok, I'll get back on my meds now.

Since I have started this whole subject, perhaps I can close it???

Thank you to all your wisdom. I know that at the end of the day you ALL want to help and YES you have helped us immensely...maybe you don't realised how much... ALL of you. I know and understand that different opinions are based on each experience. I hope we all realised this?? This is why new people like us learn and get SO MUCH of this forum (don't mean it in a selfish way). David has made his decision based on many variables and this site was certainy one of them (although I was the messanger) and he has listen ALL the replies. He was able to analyse to pro's and con's based on OUR situation, his capacitiy to deal with the PEG, the feedback from patients here in Christchurch, his doctors ( althought they REALLY press him to have the PEG, our friends, this website and others.

What makes this forum so unique is that ALL but ALL opinions and views on any subjects are freely expressed. If you really want to help, it needs to stay this way.

In the light of the respond to this topic, Brian you might a have a great idea in having a "PEG" subject in itself.

PS: His beard is starting to grow again!!!

FWIW, I don't have any problems with people here who made it through without a PEG saying so--I was told by Dana Farber if I had radiation alone a PEG was optional, if I had concurrent chemo, they required their patients to get a PEG, and this makes sense to me as I think chemo does make the mouth sores and sore throat much worse. Most of the people I've seen on this board who have made it through treatment without a PEG did not have concurrent chemo (though I know there are a few exceptions) and all I would like is that they remind new folks of that when talking about their experience because many of the new folks asking about it are people who are getting both.

I also agree with Amy that it's worth being aware that if you find yourself unable to eat mid-treatment and don't have a PEG the whole procedure for getting one can be a much bigger deal--more costly for everyone. And I also am a bit puzzled by the attitude which I do see expressed sometimes that somehow people getting through PEG-less are "tougher". We all have our own hardships getting through this treatment and the aftereffects and we really don't need to be trying to make judgments about how hard it was for us versus someone else.

Sorry if anyone finds this post either "defensive" or "offensive"--I think those descriptors are a bit extreme to describe Amy's or my responses here. But whatever.

Nelie

Can we PLEASE bury the PEG discussion now -it's like the department of redundancy department

Was I "tougher" because I did it without a PEG, maybe I was dumber but hindsight is always 20/20. Stubborn might be more appropriate in my case. I can't speak for the other PEGless ones.

This is almost as bad as Michaels 600+ posts about practically nothing and he's even not around anymore (he is alive & well I am sure). Even he got bored with it.

This is my last comment on PEG's you guys can have at it...

Gary
Don't be silly, of couse this will raise it's head again.. It's like saying that if you don't believe in Santa Claus Christmas will stop.
Sunshine.. love and hugs
Helen