John just had a CT. He finished radiation 4 weeks ago. The surgeon had looked a week ago and said it looked good but still had some burn. He said he advised removal of the nodes on the left and a biospy at that time. We were ok until yesterday and the CT. The radiologist (not at a cancer center) said that he feels there is still cancer on the tongue. I literally fell apart. John is much braver than I. Our Onocologist said she feels it can just be scarring. We are going down to see her today. The surgeon is out of town on a conference. I know I need to get a grip as I as going to depress and influence John. Does anyone have any experience with this?
Meredith

When my mother first found out she had cancer on her tongue she decided just have radiation instead of the removal of a portion of her tongue. The radiologist insisted she at least have a neck dissection and 2 nodes were found to be cancerous and were removed. She then went for the radiation/chemo routine.It lasted about 8 weeks and they were pleased with results. They originally thought she would need the radioactive seeds implanted, but were so pleased they just added another week of regular radiation. The radiation ended in August 2001. All reports were good until Dec. when her surgeon wanted a biopsy. He couldn't tell if there was scarring or if the cancer had not been completely cured. It turned out to be cancer again and it had spread to her jaw and floor of mouth. She had to have the surgery for her tongue, jaw and floor of mouth. It was quite an ordeal on her, being 79. She had the surgery in Feb. 2002 and it appears that everything was removed. She is able to live on her own and has had her peg tube removed, although eating remains an effort. I know this probably scares you, but that is not my intention. Hopefully the outcome this time is a good one. My advice would be to proceed as quickly as possible so if there is still a problem it is taken care of as soon as possible. My mother's cancer spread very quickly. Hopefully this is not the case with you. Wishing you the very best

I have some more information since my last post. We contacted John's doctors at MDACC orlando. They were both very supportive and asked that we bring in the films and see them. We did so. They both read the films and the oncologist radiologist scoped John. They both concur that he seems to be doing ok and that the CT cannot distinguish tumor from radiation scarring and fibrosis. They feel that what is showing is scarring, swelling and fibrosis. They both agree that the surgeon should do a biopsy. We know we aren't getting any guarantees but they sure were more positive.
Meredith