I think the disconnect was because of some vague language in the pathology report, it said there were "atypical cells" seen in the initial routine stains and they were only identified as cancerous with the special immunohisto stain. I guess the first surgeon thought that meant the nodes were negative by routine staining and that was how it should be staged. Then I saw an RO in town and he called the pathologist because of the vague wording and the pathologist said they did see cancerous cells on the routine stain and it was just confirmed with the IHS. So then I was recommended to get IMRT. The medical oncologist we contacted in town said he really doesn't do head and neck cancers and told us to go to U of Chicago to Dr Vokes who I hear is one of the best. Dr Vokes was very straight-forward and laid everything on the line. He was actually the first person to tell me what stage it was, actually I think it was the first time I asked the stage. Looking back I can see I have really been in a stage of denial for the past 5 weeks. But it just seems that every person I see the story gets worse and worse.

What was good was that other than the facts of how far along this cancer is, I was pretty much prepared for what they told me to expect as far as side effects and what would be involved with the treatment from reading this website. You guys really prepped me well for that aspect of the visit. My husband has been resistant to reading anything on the web other than sites for medical professionals, and has critisized me for reading too much "nonprofessional" stuff. He's afraid I'm going to get freaked out by anecdotal stories of worst case scenarios. But I think it is more helpful to hear from people who have actually experienced these things than to hear from drs who talk about dry mouth, mucositis, etc, but don't really describe what these things actually feel like. Of course most of them have never experienced most of these things so they are just passing on information from what patients have told them and what they read.

So I thank you all for the excellent info and will keep up with this site as I progress along for more good suggestions.