Portland,

You are being told the same thing by everyone but you simply refuse to accept it. You are your best advocate but if doctors won't give you chemo and radiation, there isn't a lot of options available.

Go to a pain management specialist and have them kill the pain first. That will help you identify where it is at least and you can go from there.

I had BOT cancer primary and had no symptoms. I had and have SUV values 2-5 but no sign of recurrent disease.

I knew someone once that insisted he had ALS. He went to many neurologists who insisted he didn't have ALS. He had a blood circulation problem and before they found it he died of a heart attack. Many things in these complicated bodies can go wrong and cause a seemingly infinite list of possible causes. By going to whatever doctors you are recommended to go to, you will find your answer sooner. Arguing with everyone and insisting everyone is wrong only gets you to an oral cancer forum full of survivors and caregivers. There will most likely be no life-saving interventions here like there are minute-by-minute at medical facilities.

Don't give up but don't beat a dead horse. There are about 9,000 members here. Most are survivors and caregivers. Please don't ask them all.

Thank you.