Hi,
I just discovered this site and it has been such a blessing already.

My husband,Jim,was diagnosed with SCC base of tongue in April of 2002. He is 44 and never smoked and drinks very occassionally. He had a 6cm mass. It did not spread to any lymph nodes but since the mass was so large we decided against surgery to try to maintain some quality of life. He had radiation with chemotherapy and then brachytherapy. He was put on a G-tube immediately because he couldn't keep any food down from the chemo. He had the G-tube removed in October 2002. He was doing quite well and by last Thanksgiving ate a full meal. Then in the beginning of December 2002 he developed an ulcer on the inside of his jaw bone. The pain was so bad that he had to have the g-tube reinserted. It has been one year now and he still has the g-tube. The only thing he can take by mouth is water and liquid soups. The pain is now gone. We discovered he had a bad infection that could not be treated by oral antibiotic so he went on an iv for 4 weeks. He now feels great!! His jaw however can only open enough to fit a toothbrush in. Half of his tongue is numb because a nerve was hit during a biopsy. We don't know if the sensation will ever come back. He also has some swallowing problems. To most people this would be pretty hard to live with but Jim is such an optomist. He is so happy to be alive. Even though he can't eat he loves life.

During the past year we have had many false alarms. Everytime Jim experiences any pain the doctors think the cancer is back. Jim has had several biopsys and they have all come back negative. The problem we have is that all the PET scans and MRI's alway show that there is something there and the doctors do not know if it is tumor or radiation damage. They say Jim's tests will always look abnormal. They just have to keep comparing them to the most recent test. Last Monday Jim had another MRI and there is definitely something suspicious. He will be going in the hospital this Wednesday for a biopsy. He cannot have anymore radiation so if it is positive the only option we have is surgery.

The question I have for anyone out there is for recommendations on head and neck surgeons. If Jim does need surgery I want to find a surgeon that is an expert on reconstruction. He will need a free flap for the ulcer. There is no blood supply in that area so it will not heal. I live in Southern California but we are willing to travel to find the right doctor. We have been about everywhere here.

It is just so great to have someone to ask these questions to. I have been feeling so alone, getting conflicting information from our doctors. I hope to be able to help any of you out there with our experiences.