As a grizzled veteran, if not primary combatant, in the intermittent PEG wars here at OCF, I was delighted to open my Google Reader of the OCF Oral Cancer News feed to see my Radiation Oconologist at the Georgetown CCC talk about PEGs.
[quote]Another Way to Minimize Dysphagia
Dr. Harter had some practical advice for all clinicians � IMRT users or not � who want to reduce dysphagia in this setting.

�Elective feeding tubes should be avoided unless nutritionally essential,� he said.

Feeding tubes themselves are contributors to long-term dysphagia, he explained. �The presence of a feeding tube tends to reduce use of the swallowing mechanism.�[/quote]

In past exchanges many posters have discounted my stance that a feeding tube should be only used when essential and not "just in case" due to the danger they pose to swallowing.
It was my RO's support that also got me thru the first time without a PEG and colored my opinions. He did warn me that the second round of radiation would put me at risk of never swallowing again but agreed with the ENT surgeon that the pathology report of perineural involvement and lack of clear margins after the surgery made it a necessary risk.
Yet another reason to love OCF, despite internal opinions, it always reports both sides of any controversy and does not censor reasonable dissent.
Ironically, I am on feeding tube for life, so I am not totally rational and certainly not unbiased on this subject.
Charm

Charm,

You just gotta let the PEG issue go. lol

PEG War XIV???

I HAD to respond on this issue.

Why is there such controversy about the PEG? If it helps one get through treatment and get on with life, then it is a good thing. Let us please drop this "good PEG, bad PEG" bulls*#@...Why must those who don't believe in it make it an issue? Isn't there enough that the OC patient, caregivers, and families have to deal with regarding this horrific disease? Is this a contest to see who's better--PEG users vs. non-PEG users?

Anita,

This feud is going to continue as long as new patients keep showing up at this site. There are those of us that chose the no PEG option and it did work out for us. I still remember when it was highly recommended that I get the PEG by my RO�s head nurse. She went through the whole routine with me on the problems I could face.

It was obvious I was going to man up and go without one. The male nurse who was there the whole time came to me after and said, �if I was in your shoes I would probably not get the tube either BUT that would be the wrong thing to do�. In other words the guy was siding with me on the macho side, but had to give a nod to the RO and the other nurse.

The thing I hung my hat on was the fact that they could insert the tube at a later date (although by that time you have encountered some problem that makes things harder to deal with). It was a control issue with me. I could control that aspect of my treatment and hated the idea of the tube.

You will see me advocate on this site for new patients to go ahead and get the PEG. If I had it to do all over again (your going to hate me for this) I�d go without it.

Anita

When the posts on OCF are neutral instead of urging an elective procedure, I won't have to post about it. I'm all for detente but the advice on OCF is very pro-PEG with active denial that a feeding tube does pose a risk of having difficulty swallowing later or even eating solid regular food and being relegated to soft "easy to eat" after TX.
Do I bristle at those who urge every oral cancer patient to get a PEG �just in case�? Yes. Do I seethe when my supportive comments on patients trying to avoid a PEG are denounced. Yes. Will I continue to "rise to the bait" each and every time those post appear. Yes
Why? Well for me, not getting a PEG was psychologically significant. It meant that this terrible Stage IV Cancer at the Base of my Tongue was �not the boss of me�. Despite the pain, I could and would literally force myself to swallow cans of Ensure Plus down the festering mess that used to be my throat before the radiation and chemotherapy. At the end, I awarded myself an imaginary medal for my �bravery� and endurance. I was able to quickly eat solid food again.

My initial posts mentioning studies and opinions that using a PEG could cause �withdrawal� problems or put a return to normal swallowing at risk, reignited the then dormant PEG Wars. I won't even go into the private messages from the true believers as though I had violated some taboo on urging resistance to the PEG. Others took the tack of appealling to my arrogance & pride with a variation of �yes, it can work for an exceptional person like you, but consider the common patient�. But the PEG wars were here before me and they will be here after me until there is a real balance on the board.
Charm

Charm
If you Google 'Dysphagia and Chemoradiation' there are many studies on this common morbidity.

I'm sure Clinicians at major CCC's have known about this and have dealt with it for many years (with or without PEG patients).

I think the contribution of this study is actually Dr. Harter's successful results in blocking RT to critical swallowing structures. I read where MD Anderson is also doing and recommending this.

Also, the 'Study' states: At Ann Arbor CCC ... "Feeding tubes were inserted if weight loss during therapy approached 10%".

As a member of the peg free community and a long standing member on this forum, I have seen these wars from the beginning. I have always said that if you have any surgery in the mouth or difficulty swallowing going into treatment, that it would be foolish to try to tough this out. But for the few of us who are eating with no difficulty before treatment starts, I would wait to see if the peg is really needed. I'm not against the peg, I just don't think EVERYONE needs one.

I'm glad to see that article, because I do believe that many just give up swallowing when they have the peg and unfortunately unless they are on this board, no one may warn them of the consequences.

Take care,
Eileen

My oncologist insisted that I had the Peg installed before my
treatment began. I did fine untill almost the end & suddenly It was as though a switch was pulled. The taste of thing's except water made me physiically ill! I am going on three month's post treatment & can hardly wait to have my tube removed. Eating is a challenge for me because of the usual lack of taste.Plus salivary gland's are not functioning. I have not lost any weight however, so I did benefit from it's use. However, I can understand that some people could become dependent on it. Hopefully I will have mine removed soon. I just wish I could enjoy food more as I have no appetite, but sure do miss the social part of eating in restaurant's etc. It all comes down to what our specialist's recommend & personal choice.

I think there is an important take way that IMRT has offered us, that is relatively new in the last 5 years as we have learned more about using it to full advantage. RO's everywhere, when IMRT appeared, no longer could look at general areas to be radiated, but they had to know anatomy as well as a surgeon, which they never did. There was, and still is, a learning curve at play here. Many institutions in the US unbelievably do not have IMRT capabilities even today. Many RO's are getting up to speed still on the complete opportunity that IMRT presents. The article is clear about a couple of things, the most common side effect, xerostomia, has been greatly reduced as more RO's understand, and are capable of mapping around the parotid glands. The impact of this is profound to the degree of dry mouth someone has. The issue of damage to other structures is still being explored. Even with IMRT though, some patients hsave to have radiation pass through the parotids.... and they will have a problem because of where their disease was located.

What the many PEG wars here never really get into, is cause and effect. There are those that believe that if you continue to use your swallowing muscles all through treatment, that you will be guaranteed of not having issues at the end of treatment. I wish it was that simple. Dysphasia is a direct result of the damage done by radiation to the nerves that control the swallowing mechanism. In different people, with different locations of disease, the angle and impact of the radiation beam, the radiation hits those nerves and they go south. You can continue to eat by mouth as much as you want, but once that nerve control is lost, you will not be able to swallow properly, and like me, you will have some degree of dysphagia. It gets worse over time because the damage to the nerves gets worse over time....slowly. So I urge people to try to swallow as much as possible during treatment just in case there is any validity to the "forgotten ability" that so many elude to. But even in the oncology community, this mechanism and loss of it, is not well understood, is not provable, and is disagreed upon by everyone, and I am finally glad to see someone say... let's map around this area if it is possible, and not be so cavalier about nuking it in the future. Then long term outcomes for swallowing will be better.

If you think the disagreements here between those of us that are all lay people are "wars," you should hear the oncology professionals arguments at meetings that I attend. They are divided between those that understand the issues of control vs. those that think it is a forgotten reflex. One is provable, one is speculation. There is probably some merit to if you don't use it you loose it side of things, but the bigger issue is the radiation damage. That is why there are such different opinions between all of us here. We were all treated differently. Some had surgical only solutions which completely (unless vital structure is removed) eliminates the radiation to the area of concern cause and effect. Some had radiation that likely, because of angles and tumor location, the radiation missed or only lightly touched this area of concern. Of course they too had much lesser swallowing issues post treatment. Some of us got nuked to the max and with or without a PEG during treatment, we have poor outcomes related to swallowing as time goes by. As a reference, in the first 5 years I didn't have any real issues, and I PEGGED for a protracted time. But as the radiation damage progressed insidiously, I lost the ability to control it all. It was a shock, since I thought I was one of the lucky ones but... that frackin radiation just keeps on doing its thing, and here I am, more than a decade out, and getting to the point of gagging on almost everything, and aspirating liquids into my lungs with regularity. But we all believe in our outcome wherever we fall on the continuum - PEG or no PEG - and we think we understand why we are where we are. The radiation issues, if we all got together with our treatment programs to compare, would elucidate the differences in us I think.

If you destroy the structures and nerves that allow you to swallow with radiation, attempting to force your body to do something that it no longer has the tools to do, would be akin to a person with a spinal injury getting out of their chair and walking. The damaged nerves will not let them no matter how much they work at it. Does this mean that a person with only "some" nerve damage could not "train" different nerves and muscles to adapt. NO. They can to some extent. But absolute prevention of dysphagia by swallowing during treatment is a belief that a simpler cause is at play... your body forgot in 7 months, how to do something that it had been doing for 40 or more years. That argument does not have lots of scientific legs in the published literature, just articles mentioning the fact that swallowing ability is lost.... the why isn't explored in any unbiased scientific way.

Just like my inability to move the right side of my face or mouth from the facial nerve being nuked, which gradually after a year or two got worse and worse, and continues to.... the damage to these controller nerves and other structures mentioned in the article is a reality. Continuing to try to swallow, will not change the radiation damage to the nerves. No nerves...no swallowing. That is a direct, provable cause and effect.

But the scientific argument is leaning towards -- it is the unique, different pattern of radiation in each patient, that determines how much influence this has, and less a forgotten ability to swallow. I pegged and swallowed both every day all through treatment, and I still have dysphagia. I still have strictures. So MY belief, and that of the more experienced IMRT RO's that I talk to is; that this is a radiation issue, NOT a PEG issue. I can tell you personally that the flack the article is raising in the treatment world is already today significant, and the barbs are flying. Bottom line is that too many RO's are behind the knowledge and experience curve. Too many people outside the understanding of long term radiation morbidity think they know what's what. The two will stay apart for some time to come in my opinion.