Bonnie,

I was 39 when I was diagnosed (17 years ago). I had never smoked and was a social drinker and otherwise in good health. Several doctors failed (over a period of more than a year) to diagnose my tongue lesion as cancerous. Once it finally was determined that I had SCC, my cancer team felt I needed to have a modified radical neck dissection, followed by radiation. The surgery included removal of many lymph nodes, all of which were clear, but the tumor was determined to be poorly differentiated, so my doctors were obviously concerned about possible aggressiveness.

I had standard XRT radiation, as IMRT wasn't even available back then. While I had many of the common side effects of radiation for months afterward, I have recovered substantially over a period of time. ALL of my taste sensations returned after several months, my dry mouth problems subsided quite a bit (with the help of medication), and I can eat just about anything I want to. The surgery scars healed fairly quickly and left almost no evidence of what I had to have done. Most people who have met me since my treatment have no idea (from my speech or my appearance) that I ever had surgery or radiation.

I say all this to emphasize that some of the extreme after-effects you are hearing about are likely the "worst-case" scenarios your daughter's doctors are required to describe in advance. Since she is being seen at a major CCC, it sounds like she has a very experienced team who can do their best to minimize the long-term impact while still doing what is necessary to get rid of her cancer.

Please keep us posted on how she is doing.

Cathy