Ben,
Please tell me you had more than 3 lymph nodes removed. The recommended procedure for a cancer such as yours (similar to mine) is a surgery known as neck dissection where lymph nodes are removed, good ones as well as known bad ones, to make sure there are no more bad ones. They surely did not just remove 3 lymph nodes, did they?

I understand you feel you cannot go anywhere else. You could still get a second opinion though. You're not that far from Minneapolis. What about the University of Minnesota? Can you make a signature that will appear at the bottom of your posts to let us know what happened? For instance mine tells you how many lymph nodes removed, it was a selective neck dissection which means the surgeon decided he could choose the ones that were likely to have disease. Some disease could be undectable by the PET scan.

Cancer such as yours and mine is shown to respond better when surgery is done first then followed up when necessary (yours & mine it is/was necessary with radiation and chemo). That statistic is out there.

Regarding your concern about odds for staying in remission going down after 5 years, really I'm used to thinking of it as the odds of getting cancer going up continually. I think the odds go up for everybody, regardless of having had cancer or not, for getting disease--our bodies are not made to endure forever. 261 is not a large number, I agree. Truly meaningful statistics are perhaps not out there. I can absolutely tell you there are people who are negative HPV with their OC who have lived more than 15 years. Cancers of the oral tongue are not HPV positive cancers.

I don't believe I was given a staging before surgery. Because they thought it was strange that my oral cancer had metastasized, they were not sure all the cancer in my tongue had been removed, so they cut more out, but found no more cancer. All the other structures in my neck checked out, and following surgery they were certain they had removed all visible cancer. So it was only then they really knew what I had. Then two weeks later I found out about the extracapsular extension. That did not change the staging, just added chemo.

Ben, sorry you have been dealt this hand. In fact I'm sorry we all have been. But whatcha gonna do? It goes against my grain to give up.

This is longer than I intended. Let us know that you did have a neck dissection of more than the 3 lymph nodes.

Best,
Anne