Well, I got back last night after seeing specialist at University of Chicago Medical Center, and their opinions were a lot different. They say I have a Stage IV cancer and are recommending both Chemo and IMRT. I'm pretty stunned right now, this has gone from being no big deal, let's just watch to being the worst case scenario. Obviously I'm going to go with the aggressive treatment, but right now I'm kind of numb and depressed.

It's a scary thing, isn't it? But it can all be dealt with by knowledge and support from others -- The knowledge is here and there's also a LOT of support.

Dealing with the depression is part of what a good medical team can do for you -- The numbness will pass as you adjust to your new "normal".

Read a lot on this forum about the things to expect and the steps to take during treatment and recovery to lessen the permanent effects (like getting enough nourishment, continuing to swallow and exercising your jaw opening).

Lucifen,

There are a lot of us Stage IV's that did quite well with the Tx and with multiple mets to the nodes I thought was an automatic IV so I'm surprised that you weren't told that right off the bat.

In my recollection of staging, multiple lymph nodes, even if on only one side, put in in the Stage IV arena. Mine was also a 2cm primarty, although at BOT. I also had bilateral ND, with 1 obvious node and another microsocpically suggestive of involvement, both on the right.

17 months after the end of treatment, I am doing pretty much whatever I want, with some limitations from the ND and radiation fibrosis, but more annoyances than anything. Just had my most recent follow-up with the RO, and everything looks good. So the key is to get yourself to the best cancer facility you can, do EXACTLY what the doctors tell you to do, and stay active and positive.

We have all been there, done that, got the T-Shirt, so never be afraid to ask any question or vent any feelings.

My RO told me size alone made mine a stage III and if it was in the lymph nodes it would have been a stage IV.

There's kind of a crossover in staging between the T and the N when it's spread to the lymph nodes.

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

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.

I know what you mean. My GF felt that I did too much research and that the site made me more nervous. It was the other way around for me, this site helped me more then any other out on the World Wide Web and helped me understand what the doctors were telling me. I don't believe I would be as mentally secure as I am now if it wasn't for the people here on OCF. I cannot say enough thanks to my family, GF, friends, doctors and my OCF family.

It may be nice and helpful to read the medical stuf, presuming one can actually understand it, of course, but I find it darned helpful to get advice from actual victims on what to expect, what to guard against and some Cyber-Support!

BTW, no one actually told me what stage it was until I asked my EMT.

I just found out I have Stage IV cancer also and am having a neck dissection October 2nd. Been reading on here for a while because I was afraid it would show up cancer even though the ENT kept telling me he didn't think it was anything abnormal, just a swollen lymph node. He did a needle biopsy almost reluctantly and then still didn't believe the reading and sent me for a PET scan before he decided I really did have cancer.