There clearly are people that got through treatments without a PEG. Some think is was because of something they personally did. I don't agree with that assessment having watched hundreds of patients go through the process. The truth of the matter is that each individual is affected differently by the treatments. The swallowing issues that develop in some people and not in others are more a function of the type of radiation, the pathways it takes, the structures it hits, the levels of it, and the number of treatments, not to mention the person's own physiology.

Given the benign nature of getting a PEG when you consider the downside of not getting one until the weight loss (and the accompanying nutritional deficiencies have already begun to compromise healing and well being), it is just are not worth the compromises. Your doctors are going to be the best judges of if you need it or not. But if more than 10-15% body weight is lost, and they haven't intervened, you need to step up for a serious discussion of it all with them. This usually isn't an issue a a big multidisciplinary institution. When you start loosing weight you are also loosing nutritional health. There is a point in which the decision to get one or not is often taken out of your hands. Just because you have one does not mean that you cannot continue to eat by mouth as possible. In many people it is the combined methods that allow the appropriate caloric intake.

I for one cannot believe that it has been posted here - after you have said that he is getting thin (this is not a good sign) and that he is only drinking carbonated beverages right now, that anyone would think that he is getting enough food/nutrition, and that he should avoid a PEG. That borders on illogical bad advice to me. If he gets weak from an immune perspective from poor nutrition, he is going to have longer healing, more complications like infections and other opportunistic problems, that with a stronger immune system from proper eating he wouldn't have to deal with.

It goes without saying that most of us have a psychological barrier to getting one, and you can put me at the front of that list. But in the end it likely made the difference to me in the duration of my recovery, and the amount of lean body mass that I lost.... which even with it, was startling.

I didn't want one at first but I gave in and listened to my Dr and wife. I hardly used it, but I sure was glad I had it when I needed some nutrition. And it made my wife comfortable knowing that she could feed me if she had to. If I had to do it all over again I would definately have a the PEG.

Tim

My husband and his doc felt that he wouldn't need one because of his radiation field. Starting week 5 the decline began. In about 15 days he has lost 15 pounds, become dehydrated and his counts were too low for chemo last week. 3 weeks ago he was doing GREAT; 2 weeks ago pretty good... It just hits - BAM. His RO was very discouraged and I can't remember who said PEG first, me or him. But needless to say we got one - no choice in my mind. But it was not easy (it happened today). Anyway the point of this "ramble" is it is alot harder on a body in a weakened state - it would have been easier to get it to begin with.

I think it is a personal decision and I don't think people should push others in one direction or the other; nor do I think a judgemental tone should be used when discussing it. Especially with new people - they don't know as much, nor have they seen as much as the old timers and they shouldn't be treated as if they are doing the right or wrong thing. They should just be given information. That is my interpretation of why Brian works so hard for us to have this site.

There's nothing wrong with having a PEG or not having a PEG. I relate it to a pair of crutches with a sprained ankle - use the crutches and it's easier, etc. and you still get well; don't use the crutches and it hurts like hell when you walk and you can still get well, but you are taking an educated risk that could cause a facture or torn tendon or something worse. (simplified and not a TRUE comparison I know, but you get my drift)

IMO there are TONS of things in this hellacious cancer experience that we cannot help or control, and that is TOUGH. This is a fairly easy procedure that we can control and can help. Just my unscientific poll of people who have had one - there aren't many regrets and most say they would do it again.

Wow - didn't mean for that to go quite so long, but I just got started and coldn't stop LOL

Moffitt did not require me to get one and they did not insist when I lost tons of weight. There weren't to happy with my resolve either. Now since I didn't have one I can't naturally speak to what it's like having one but I have read many posts of people that had them that became dependent on them and used them for many months post Tx and complained about post Tx swallowing issues. I have also read about infections, cleaning issues, etc and so my purpose about my post is to give the opportunity to present both sides of an issue that is clearly not SOP with all CCC's.

I also did not have a ND so again I'm going to be an advocate for second opinions when it comes to that decision. I also was tested positive for HPV so when the "facts" dictate I'm going to recommend that test. The value of this Board is that there are many different opinions that can be offered so that newbies can fully discuss important issues with their doctors.

Colleen:


I wish your brother the best in his treatments. Its great to hear he can still eat. Hopefully he can eat enough to sustain him. Now is the time to push nutrition and calories.

I didnt want a peg tube at all, and hate the thing so much! I do have to admit, it has saved my life. I got to the point where I wasnt able to eat anything, even a sip of water burned my mouth and throat. There was no way I would have been able to swallow pills, the peg tube is great for taking meds.

This could be somthing that is very important to your brother's survival. Remember everyone is different and some have a harder time than others. Dont let it go to far with weight loss and poor nutrition before you look into the peg tube. Its better to have it and not use it than not have it and need it.

Remember that Ultimately it is your brother's decision to make, NOT the doctors, nor anyone else. Like David, I refused a PEG tube over strenuous objections by the doctors in the CCC based on the fact that I had run marathons 25 years ago weighing 136 lbs so losing 40 pounds from 177 still left me a pound to the good. I never needed hydration nor any IVs (except of course the Erbitux IV)and just drank my 6 Ensure Pluses a day. It wasn't easy but neither is a PEG. To show just how confused even the doctors are on this, here is an excerpt from an interview with the director of the Swedish Cancer Institute on PEG:

"H. JACK WEST, MD: How often are you having patients get a percutaneous endoscopic gastrostomy (PEG) tube prophylactically at the beginning, or are you integrating IV fluids regularly, just to keep people going? Is that a common occurrence, or is that really just a reactive approach, as needed?
VIVEK MEHTA, MD: The idea of a feeding tube or a PEG tube is one where I've been at both ends of the spectrum. When I trained, the idea was that we would not put a PEG tube in any patient because there was a portion of patients that could get through the treatment without needing the PEG tube. So, if you put it in everybody, you were potentially overtreating these patients with PEG tubes. Then, the idea that treatment breaks should be avoided became so compelling that you really wanted to prophylactically put this PEG tube in everybody, so that you could avoid it. You want to keep them nutritionally sound and hydrated; so you put a PEG tube in everybody.
I have now moved onto

Hi Colleen,

My brother did not want to get a peg tube. It was increasingly difficult for him to swallow and he ended up in the hospital for severe dehydration. He also lost a LOT of weight (right now, he is about 150# and is 6'1").

After the hospital episode, he ended up getting a nasal tube. They put it in while he was sedated because of how bad his throat and tongue were. He had the nasal tube for about 6 weeks, I think. The nasal tube was good for him for hydration and calories, but it was very, very slow. He had the nasal tube valve open as far as it would go, and it still took a long time to get the liquids in. He had to stay upright during the feeding and it really drained him of energy.

I definitely concur with Charm2017 that it is your brother's decision to make. Obviously, you and others (including doctors) can provide information to him. One of the things that Joe said during treatment was that he felt like he was losing control of his decisions ... that put us on notice that we should help him, but not tell him what to do!

Jean

I do not believe that it is credible to advocate not to get a PEG and at the same time write that one lost a ton of weight and did so against medical advice. Are we now advocating that loosing weight during cancer treatment is good?? Surely not.
Clearly you do not have to take medical advice or consent to treatment but you will have to live or die by this decision. What is next, deciding which tissues to irradiate, angles and dosage? There is a difference between an opinion and a qualified opinion.

I also disagree with the the statement that one is taking an educated risk. Since non of us know how we react to the treatment up front (how could we) and we have plenty of evidence that the majority suffers miserably, it is a gamble (hoping that one is the exception) and the odds are not good.

If you do not get a PEG the following may happen:
A) you will need a PEG anyway... which then will be more problematic. If you get radiated you will have a raw throat.
B) you might need hydration/feeding at the ER
C) you might get VERY lucky.

If you ask people who had a peg and therefore have experience what is like to have one, the following would be observed. There are those that absolutely needed a PEG and those may advocate that you need one. Then there are those who had one but did not use it or used it only rarely. Again! if you are VERY lucky you may belong in that group. Assuming now that you are lucky(!!) it is instructive to hear what that group has to say about it. If one scans the board the majority was glad that they had the PEG despite the fact that is was a nuisance. I did have a PEG and I used it only for a short time. Although I too lost weight I had no ER episodes for dehydration/feeding. In retrospect I probably could have done without it, nevertheless I am GLAD that I had the hated thing. As far as dependence goes: the fact that you have a PEG does not mean that you have to use it. Most of us want to get rid of the thing as soon as feasible. Stating that there is something wrong with those who are dependent on a PEG is just strange.


M

This discussion has been done here many times before, though the people have changed, the disscussion is essentailly the same. You have some people who didn't have a PEG telling people they should avoid it if possible, others stating how they couldn't have gotten through things without one. In my opinion ADVOCATING for not getting it is a disservice.

First, their experience is unique to them. Their treatments are unique to them, and someone else who is developing severe mucocitis, or swawllowing issues from the radiation treatments (it has never been scientificlly proven that anyone "forgets" how to swalllow) will be poorly served thinking that if someone else got through it without swallowing issues, they will too. These issues are directly related to neuro-muscular and tissue issues related to radiation damage in most cases. Even doctors cannot predict in their patient populations who will have swallowing issues and who will not, so the posters on this board being significantly less informed, and having significantly fewer patient contacts to actually develop a database of patient experiences to draw from, are poorly qualified to express CLINICALLY ACCURATE opinions. They can only talk about their own experience, which may or may not apply to the new person they are posting to. (Your milage may vary) ADVOCATING for something for another person, like NOT getting a PEG, which is only a successful path in a small sampling of all patients, becuase it worked for you, is a disservice. There is a difference between talking about your own experience and being an advocate for people doing what you did. David's argument that this is what he is doing, I do not agree with. He should talk about his experience, but advocating for not getting a PEG is wrong. He is not qualified to urge people to go one direction or another. He certainly has a right to have an opinion, but when the tone of that opinion turns to advocacy - I think this is wrong.

We all have a responsibiliy to provide people with useful information, and speaking of our own personal experiences definately helps people that have not gone through the issues realted to the disease and its treatment is very helpful and reassuring to newcomers. But there is a line that we should not cross here. We are not doctors, we do not know the unique issues realted to each new patient, their unique treatment plans, other collateral issues not related to their disease they may have, and their body's unique response to them, and the TONE of our postings should reflect that.

I don't agree with many things that are posted on these boards, but I only step in when I think that a patient might be getting wrong information, or an opinion that MAY cause them to believe something that might not apply to them. As an example, David and I have disagreed often about his posting to every new poster that they should get an HPV test. He believes this will be of some value to them. I do not, since it does not change anything in their subsequent treatment protocol, at least with what we know today. But his offering that question does not hurt anyone. It might answer a "why" question for them, but still in the overall scheme of things I do not believe it offers the answer to any USEABLE question. I think even that to some extent it confuses the issue at a time when they need to be making serious decisions. So I have quit talking to him about doing this. When somewhere down the road HPV status changes treatments, then it will be a valuable question, today it is not. But the bottom line, despite his passion for that topic, no harm is being done.

The PEG issue DOES NOT fall into that same realm. We can potentially hurt someone with an encouragement not to get something that will make their path through this process better/easier. Any argument that the minor issues that might go along with it, like some people getting an infection or similar minor complications, do not negate its overall benefit to the vast majority of patients.

Lastly, since two people have stated this, it is a patient's right to have or not have any given procedure. But to the vast majority of patients who themselves are not doctors, they are best served by following their doctor's treatment plan. If a doctor recommends that you get a PEG, you ought to follow their recommendation. Like Marcus has stated, you can refuse to have anything done, including radiation, chemo, and PEG tube insertion. My question is, at what point do you think you know more than the doctors and the institution that is treating you? If you knew so much, and thought that your opinion what better qulified than theirs, what are you doing being treated by them in the first place? The most important thing we can do as patients is become informed, and make the best possible choice of treatment facility, and/or doctors. That decision and learning curve is steep and has to happen rapidly. Once we have made that important decision, we have to start deferring to the years of training and experience that they have, and focus on dealing with our own battles, not the least of which is the emotional roller-coaster that we will be on for a significant period of time. If we are going to second guess these more knowledgeable doctors and institutions, I believe we are on the verge of interfering with a process that may save our lives, reduce complications, and negatively impact the optimum progression of events. This does not mean that I don't believe that some doctors can make poor choices, but on the PEG tube issue, I doubt this, except those that we have seen here that have been negligent in getting one for a patient of their who has loss massive amounts of weight, is nutritionally compromised and is in the emergency room for dehydration. If anything those are the treatment errors that we see here.

As to someone who thinks it is OK to drop to a weight that they were at 25 years ago, when they were fit and a marathon runner, I simply state for the umpteenth time... This is not about weight. This is about caloric and nutritional intake and hydration. Rapid weight loss even in a non-cancer individual, is not healthy, and dieters are told this with regularity. You may think wow, I am back to my fighting weight, something that has lapsed over the last quarter of a century as your lifestyle and nutritional and exercise habits changed, but the real question is what nutritional necessity has been compromised in that weight loss? What is your lean body mass ratio at the end of that rapid weight loss? I guarantee you that your lean mass is not the same as it was when you were a marathoner. You lose essential lean body mass along with adipose tissues, and this does not make you healthier. IT IS NOT ABOUT WEIGHT. Lighter is not healthier. That is an over simplification of a very complex situation.

As the the Swedish article, they put PEGS in 97% of ALL their patients. The end of the article is this Quote

Conclusion:
PEG is a safe and a well tolerated way of ensuring enteral nutrition in patients with oesophageal cancer. The risk of the PEG complicating any later operation is minimal.

In another article where they talk about complications, they clearly state that serious complications were mostly related to inexperienced doctors doing the procedure. And as to long term PEG users, there are many reasons for this, none of which are worthy of doctors intervening in the process. Often they are older patients with other collateral complications, that have dysphasia, chronic aspiration pneumonia, and other reasons to keep them. There is no down side to people having them for protracted periods should they choose to, though it is clear that the vast majority get the PEGs out soon after treatments end and ability to eat normally returns.

Just to clarify my point - I certainly think that doctors should provide information AND direction. My comment about "this being the patient's decision" was meant about well-meaning friends and family who might steer the patient in one direction or the other because of personal opinions, rather than medical information.