Hi Catherine,

Welcome to OCF!
In answer to your question, " Has anyone had success with surgery-only treatment (no radiation)....or is radiation always used as follow up?"
My husband was initially Dx in Jan 05. He had a small area on the left side of his tounge that was not painful and looked like just a streak of leukoplakia. His dentist too was the one that sent him to an ENT for assesment and treatment. The spot had only appeared one week prior to seeing the dentist and it took only a week to see the ENT. So two weeks into the discovery the ENT took a biopsy and sent it off for examination. It came back as SCC. the ENT surgeon sceduled my husband for an immidiate partial disection of the tounge. He took a small portion of the left side of his tongue. After testing it was determined that it was surprisingly superficial and all margins were clear. The ENT surgeon was confident that no radiation or chemo was needed. He put us on a tight follow up schedule. Of coarse I can't impress enough how very important it is to examine your mouth and tongue every day. Not only visually but by touch as well. You should be very aware of how every area of your mouth looks and feels. Most often you will detect a change in the smoothness or texture before noticing any outward visual signs.
After almost exactly 3 yrs.(12/07) cancer free my husband noticed another small whitish spot in the same area of his tongue. He went straight to his ENT surgeon and the whole routine began again. Biopsy,surgery,clear margins etc... The rest is history as you can see from my signature.
I don't consider the return of his cancer after 3 yrs. as being wholely unsuccessful. He was cancer free for 3 yrs! I do believe that being proactive and finding all the information you can and taking charge of your treatment is a must. You are on the right track by reasearching and talking to everyone here to see what type of treatment and outcome they had. Ultimalty it is up to you to choose what is right for you. We wondered for only a moment when my husbands SCC returned in his lymphnodes if we should have proceeded with radiation and Chemo the second time it appeared on his tongue. ~shrug~ We have let that question go. We chose what was right for him at the time. After weighing all the stats, percentages of poss return vs not and recommedations from the radiation board. We opted to wait on radiation or chemo. We felt the odds were still in our favor.(the tumor still being isolated to just the one area and surgery was a simple dissection without the need of any grafts or the like. and all other tests and PET scans were clear)
We are not disappointed that he is now in treatment it just is and we are being as agressive as possible this time around. We have no regrets.
May I also suggest that you see a dermatologist. SCC is also a common form of skin cancer and has been known to travel(all be it.rarely) to organs. take good care of your skin using sunblock always and have any unusual spots checked right away. Just another preventative but it's always better to be safe so no regrets later.
My thoughts are with you as you begin paving the way on what treatment you will pursue. I have no doubt you will find what is right and what will work! for you. You have obviously been hashing through all the information you can find. I have no favorite sites to share with you that haven't already been previously shared. Just know that my heart is with you and everyone here is here for you as well.
all my best, ~Ija~