First I want to thank everyone for sharing there stories and reaching out. I wish I new of this site years ago. My hospital does have several support groups, but I have been too sick the past year to attend.

Yes, I was first diagnosed 13 years ago. At that time I have never heard of this type of cancer. I had stage 1 tongue cancer. Right side, underneath tonge. Elected to remove right lymph node for this cancer likes to move down and is so micrscopic it would not be detected. All nodes were clear. When cancer came back in 2010 my ent was schocked. After 10 years technically I was clear so they said this was a new primary cancer. April 2011 Cancer came back in neck. They did say it spread from the mouth cancer, even though margins were clear and we thought we got it all.

Right now all my nodes are clear. Last Aug had 7 weeks of radiation and chemo. Next pet scan is May 4th. Last scan was not clear. There may or may not be something in my right lung. Hope it was just inflamation.

Please stay in touch. I am here to help you too in any way I can.

Wishing you all the best.