A while back someone posted the "normal" guidelines based on type and stage of head and neck cancer. I saw it yesterday on the NCCC and NCI sites. Sorry, I don't have the link.

Ed

Here are the guidelines:

http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

Keep in mind, these are only guidelines and what I would consider "normal" treatment protocols.

Ed

I hate to throw a monkey wrench in the works, because I feel like I'm an outlier (sp?) These pesky cancer cells can also travel through the bloodstream rather than the lymph system. I would stress the importance of some scan of the lungs and bones to be sure you're not dealing with mets. Since there's no chemo on the list of options then you're not being treated systemically. I only mention this because no one at MD Anderson thought to look at my lungs before surgery or radiation and I think it was there. I'm not sure it would have changed my treatment because my cancer is very chemo resistant, but it would have been nice to have all the information.

My two cents.
Lynn

Hey John,
My husband had stage 2/3 tongue cancer, had modified neck dissection, nodes were negative (although found out later that only a few nodes were taken)...oral surgeon said no need for radiation due to clean margins and negative nodes. Not even 4 months later Dan woke up with a "swollen gland" which turned out to be a very aggressive neck tumor. It was never determined to be in his nodes, but in his carotid and jugular. So, just make sure you get all scans necessary and get informed opinions. We had to act so fast and I was not familiar with this board at the time, so we were not referred to a comprehensive cancer center until after Dan's radical neck dissection where they couldn't get all the tumor. Had I known more, we would have started out with a tumor board and a team of docs, not just an oral surgeon who had not seen much oral cancer in his young life...you live and learn!

You are in my prayers and God bless you and your family as you get informed and made some hard decisions.

Debbie

John...Please note that I am referring to cervical mets with that high twenties number. Without cervical involvement distant mets are not very likely, and the 10% that he told you sounds about right. While there are no absolutes in any cancer, the known routes of mets with this cancer are pretty well defined depending where the primary was. I couldn

Thanks for all the responses, I am getting closer to understanding. Brian, could you please define a cervical med for me?

Thanks again to all. The site has been very useful and informative.

John

John: Your scaring me. If I am reading your posts correctly, you have not had any CT/Pet/CT with contrast/MRI scans at all? If that is correct, I would get all of them (at least CT with contrast and PET) immediately. I had chest X-ray, CT scan with and without contrast, PET scans, needle biopsy cell samples and finally sonigram directed needle biopsy before cancer was even confirmed. If I were you I would get them all done and mine were done for the head, neck and entire chest area. Of course, I smoked for almost 40 years so they were very concerned about lung issues.

I do understand, though, the concern about using up all of your radiation. If there is no indication of a tumor, where would radiation occur? Perhaps someone else knows about that. All I know is my radiation and chemo treatments were all directed at a know tumor in the lymph nodes and that there was no other area at which rad was directed. The chemo (ciplaten) was claimed to be able to kill off any cancer cells that had traveled to other locations and were to small to show up on scans. But until you have scans to find any other places that tumors exist, you don't know what to target, at least thats my understanding. So start with the scans.

I am referring to metastasis (mets) of the cancer to another location remote from the primary (original) location. In oral cancer this metastasis is most likely to the cervical lymph nodes of the neck.

Brian,

Understood, thanks.

John

Brian,
Are there different sets of statistics (odds) for where the cancerous nodes were, how many, etc.? For example, I had micro mets (didn't show up on the CAT scan with contrast) in one lymphnode, the one that was closest to the tumor in my jaw. Out of 17 nodes this was the only one with cancer.
I know we are all different but I just feel the need to ask this question.