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.
Last edited by Brian Hill; 05-21-2010 10:24 PM. Reason: corrected grammar