Hello, my name is Cherri and I was diagnosed with SCC of the tongue (right anterior) in May of 2011. My problems started back in late November when I became concerned about an ulcer that would not heal. I made an appointment with my dentist, he said it was nothing to worry about (called it a traumatic ulcer) and gave me a special mouthwash. After about a month the ulcer still would not go away. I mentioned to my dentist that I thought it was cancer and he told me that given my age and lifestyle that was most likely not the case. I have never smoked or chewed tobacco and rarely drink. However he did send me to an oral surgeon. The oral surgeon also thought it was nothing to worry about and gave me a paste to put on the ulcer. Over the next 9 weeks or so I saw him 2 more times and he finally decided a biopsy was in order. Sure enough it came back as SCC, moderatly differentiated. I was shocked, mad, etc. I was told on the Friday of Memorial Day weekend so I had a nice long weekend to sit and stew and drive myself crazy. The next week I was able to get into a cancer treatment center in Tulsa, OK. Had a PET scan which showed a possibility of cancer in a lymph node just below my jawline. I ended up not being happy with the ENT there (scared me by saying he might have to cut my whole tongue off).

The radiation oncologist in Tulsa referred me to an oral cancer expert in Oklahoma City. I found out he is actually one of the top three in the nation for head and neck cancer. He and another plastic surgeon were able to do the partial glossectomy (about 1/3rd of my tongue) and reconstructed it with part of my forearm. I call it my "shark bite". They also did a selective neck dissection on the right. The surgery lasted 12 hours and I woke up with a trach and an ng tube. I had to have the trach for 4 days. I was in the hospital for 7 days. NG tube removed on day 7 after I demonstrated I had no trouble swallowing clear liquids and then soft foods.

Two lymph nodes turned up positive but were well encapsulated so my followup treatment is 33 radiation treatments. I was offered the Erbitux clinical trial but just didn't feel it was for me. I just finished rad treatment 17 today so I am halfway through! So far I have a very minor sore throat (got some nice little sores back there) and just last week the taste issues hit me. It's been very helpful to read through all of the posts regarding which foods to try. Right now most things taste like paste or cardboard. I am finding that the blander the better. I really don't want another feeding tube so I am being very vigilant in making myself eat.

Thanks to everyone for sharing their stories! You don't know how helpful it has been to me.