They never will m - the great PEG debate has been going on, ad nauseum, since the beginnning of the forum - just take it with a grain of salt.
I don't think Mark's "congratulations" on completion of RT (i.e. treatment) brought on the "debate".

This PEG business is always very emotional for some odd reason. Factually, most patients here have had PEG tubes and did well because of them, a comparative few needed them for extended periods of time. A few have had problems with the PEG, either placement issues, leakage, infection, heartburn or nausea. A few have had PEG tubes implanted and not used them and several, (like myself) refused to get one and are doing fine today. A few persons here live in countries where PEG tubes are NOT standard operating procedure. Other PEG facts - some RO's will flat out refuse to give treatment unless you have one.

As far as the "badge of couragous" thing goes -we need to focus on providing the patients with the best advice we can and leave the BS out of it. To PEG or not is a personal choice that should be made in conjunction with the medical advice from your team of doctors. They are like any other form of medical decision - risk and benefit must be weighed and it is as simple as that.

This "warrior attitude", "badge of courage" stuff has got to be directed at the caregivers and outsiders who hope that if THEY get cancer they can "beat" it. Being a patient and 3 1/2 year survivor, I can tell you, from my experience anyway, that I live one day at a time. I did not have a "courageous", "brave", "warrior" attitude at all - ever and I never, ever will say I "beat" cancer. I was scared most of the time when I was in treatment and frankly had doubts at times that I would survive. In fact I cringe when well meaning people say "oh you beat cancer" I remind them that "I am cancer free today" and that's the best they're going to get from me.

I am a person of faith and that helped me to accept the realities and find some peace in the midst of all of the chaos. Am I still afraid that my life will be dramatically shortened as a result of this disease (or the treatment of it)- you bet and my story was a cakewalk compared to many others here so I can only imagine where their heads are at.

I hate all of the tests, doctor visits, scans, fear, etc. I would give anything to have my old uncancerous self back.

The people with REAL courage here are the ones who are dying, living their life each day, one day at a time and with dignity. I should be so blessed to have that kind of courage if I were in their shoes.

So lets save the "courage" thing for the real deal and not whether you got through this with a PEG tube or not.

Whether or not you absolutely need the PEG or not depends on how adversely your swallowing ability is affected by radiation.

As someone who was adversely effected, and has had even more swallowing problems with aftereffects of radaition on swallowing, I can say that it is frustrating enough to lose that ability in treatment, even more frustrating to not be able to easily regain that ability, and probably more frustrating still (I'm not at this point yet) to realize you will need a PEG for the rest of your life. Yet we have people in this forum who are in all of those spots.

I am happy for anyone who finds they can get through radiation without a PEG, but if there is any admiration related to this, it is for those folks on this board, like Tom Jackson, who are pretty much permanently dysphagic after their treatment, with all the hassle and social alienation that goes along with that (something that I have learned too much about in year since my treatment ended and I didn't regain my ability to swallow), and never complain about it but spend a lot of time supporting other folks here who are going through dysphagia for some temporary period as a result of treatment.

Nelie

Gary, beautiful post. Ditto the "warrior" thing........I wasn't a "warrior" during treatment and I'm still not, at the moment I'm losing sleep over this implant business and true warriors don't pace the floors at night!

The day I accept some of the situations I see others on this board dealing with, and with the same amount of dignity.........that is when I will consider myself a warrior. For now, I'm just one lucky woman that is still here to see her children grow.

Amen to Minnie. I have had chronic insomnia ever since I started treatment. I am sure that true warriors and people of courage sleep well at night ;-)

Basically that's what my H&N surgeon told me also. I figured it was because of my stellar lifestyle - years of non-smoking, drug or alcohol use, perpetual optomist, etc.. Healthy foods, etc. No exposure to Agent Orange, etc.

But he summed it up to "just plain luck".

In the real scheme of things a PEG tube is a "3" but many prefer to give it a "10". There are much bigger fish to fry then having some dumb tube hanging out of you.

Gary, That post was wonderfully put. We tend to focus on small, minute problems while there are so many others that REALLY "have their plates full".

Thanks for your words.

Molly

Don't have anything new to add to the above, besides I have to go out to the big garage and pry John away from his Model A to come in and do a peg tube feed-his only means of nutrition since Dec 05. Amy

Amy............how does it feel to live with a true warrior? I'm thinking of you both.
Love,
Minnie

Gary.............I'll be thinking of you around 3am. If I get 4 hours of sleep a night, I'm doing well.

I think the only person on this forum qualified to answer this is Gary Allsbrook.

Danny Boy

Would someone mark the best threads on PEGs (I am traveling and speaking as well as doing three TV appearances this week on oral cancer, and can't get to it) and email them to Chester. Just the www.page title at the top will be enough for him to pick them up and we will post them to the FAQ's section at the top of the forum. In the future if there are (and there will be) more PEG questions, that we can just refer people to there - we will. New information, problems, or questions we can answer here.

On this same subject, I have posted it here many times before, we have some really information heavy posts here, which I hope that Tom will pick up as they are as parts of the getting through it project rather than reinventing the wheel. But on that note, they should also be added to the FAQ's. This takes time on someone's or many people's parts, and getting them in the FAQs is an important thing. Soon we will have to start seriously pruning the boards of old posts. Some of this valuable information will be lost if we can not find volunteers to do this since we will just cut out big chunks of postings by earliest dates. Without doing this, the boards will take up too much server space and begin to run slowly.