I had surgery on May 17 to remove abut 60% of my tongue and the lymph nodes in my neck. I had very clear margins and the cancer had spread to one lymph node but it was still intact. The part of the tongue I have remaining has been painful. It was understandable right after surgery and it did subside. Then, about three weeks ago, it started hurting again, progressively got worse and started to swell. Different doctors checked it when I complained over time but said I was just biting it. After a week into radiation, it got so bad I could hardly wear the teeth guards due to the pain and couldn't eat very well. They had to put the feeding tube back in. I told them no more radiation until they did a CT scan. They did it and found what appeared to be a tumor. I had a biopsy done four days ago and it turns out that it is cancerous. It's grown to almost one inch by one inch in size and is in the back of my old tongue and extends into my graft tongue. The surgeon who did the biopsy (also the one who did the hemiglossectomy) said he could operate but wouldn't recommend it because of the location and the quality of life I would have if he did. He explained what functions I would have left and I agreed with him. I asked him if there were any good alternatives. He said just chemo and radiation to try to shrink it and buy more time. He couldn't find any clinical trials that I would qualify for. My wife asked him how long I would have if they couldn't shrink it. He said maybe two months. So, to anyone who has this done, if you have pain that doesn't subside in a short time, push the doctors to do a CT scan. If the catch it early enough maybe you won't be in the position I find myself in. I meet with a radiologist and and oncologist in four days to discuss the proposed plan and the chances of success. At this point, I don't have much hope.