I have been following this board for the past several months, as I underwent 2 surgeries and radiation for adenoid cystic carcinoma of the parotid (major salivary gland) T2N0M0. I am 42 years old non-smoker, 3 children, and am very healthy otherwise. I have not seen much regarding ACC in particular, but have found most of the information applicable nonetheless. ACC is very rare, I have spent months researching and asking questions, but always appreciate learning something new.

The choice to radiate or not is indeed a difficult one, as I went through a similar decision to that of Luigi's. After visiting 2 CCC's and obtaining additional opinions from well respected RO's with experience dealing with adenoid cystic carcinoma, there was still question about whether or not radiation was absolutely necessary now or to save it in the event of a recurrence. I chose to do the radiation, in spite of all the horror stories that I heard. I beleive that I was one of the fortunate ones, and have not yet experienced serious side effects that had made me so apprehensive. Yes, I have a sore tongue and a dry sticky mouth, and I can't taste anything at the moment, but it has only been two days since I finished radiation, and I expect most normal functions to return. I am 105 pounds and only lost 2 pounds during the 6 weeks of radiation. I used the "magic mouthwash" for the last 2-3 weeks as needed, but have not even need pain meds, just a little help with sleeping. One thing that I have noticed, is that usually only the people with the worst experiences take the time to write about them, so I just want to let some of you know that it isn't always that bad. I have about the best prognosis that I can expect at this point. I guess the advice that always stuck in my mind the most was that at least if it does come back later, you will know that you did everything that you could.

I am curious how long it takes to get your taste back though. My favorite foods were ice cream and chocolate, about the only tastes I can pick up at this point are some vegetables (no salt or sweet tastes at all).

Mary T