I have read this thread for some time now without comment. But I wish to make two brief points. It would seem from many comments here that many do not realize that IMRT isn't available to everyone based on the extent of the suspected infiltration of the disease. As a stage four patient, I wasn't a candidate for it, and no amount of demanding it etc., would have made any difference. With suspected tissue involvement even if microscopically small, in a large area of my head and neck, the old standard was considered, for me, the gold standard. Sometimes a greater area of radiation is appropriate, even if xerostomia is a guaranteed by-product. Is a chronically dry mouth a pain the ass? You betcha. But I sure am glad that there were no stray areas of tissue that harbored a few malignant cells living when they were done with me. Especially given that there are so many doctors just now getting up to speed on the new radiation technologies in H&N, unless the primary is small and isolated, there are issues of radiating enough area to a clinical effectiveness that completely irradicates the disease. Also it is not uncommon for the workup for IMRT after simulation to be longer. As I have posted here many times, the radiation oncologist/team has to plan many different aspects of this, the contours of the beams in the tissues, the amount of radiation in each, the duration of the beam in each etc. etc. This is a much more involved process than conventional radiotherapy was, where a few isolating lead blocks outlined the form and contour of the radiation.

I am also struck by the amount of second-guessing that is taking place. Most do not have the luxury of traveling to have multiple consultations, let alone the ability to have treatment anywhere they choose. That someone can go to the kinds of institutions with teams that have proven track records that are the envy of the rest of the world and come out of it still undecided about things, strikes me in a funny way. The abcense of a team being the most obvious. Do any of you think that in a month of traveling around the country talking to God knows how many doctors about things, you are every going to know what the team from ANY major CCC knows - and based on their experience - chooses for you as a treatment? Who that is posting on this board thinks that they know enough about the Erbitux trial and the drugs benefits to decide if this drug - which we do not know the long term benefits or risks of - is going to have significantly better outcomes five years out from those who do not have it? Who knows what the long term negative reactions to the drug are going to be? No one. Everyone here is talking like we are referring to the Holy Grail. When you have been around awhile you will be able to make a list of all the POTENTIAL beneficial new drugs that just haven't panned out in the oncology world. Or perhaps I should ask a couple of patients I know that were in the early trials of the most common drug we now use that are deaf as a result of the doses they received