Hi Eileen - No they did not remove the lump during the first surgery - just biopsied. They said during the first surgery they would first look down through his mouth and do some frozen sections right then, but if nothing showed up on the frozen section, then he would continue the surgery and open up neck from outside to do further biopsy. Second surgery a week later was to remove left tonsil as he indicated primary often hides in tonsil and to take further biopsies (panendoscopy?). So he did not have neck dissection although ENT surgeon says that will be necessary after the radiation and chemo treatments are done, however, the radiation oncologist seems to think the radiation will take care of everything to the degree that surgery will not be necessary.
I am not really sure what CCC is - I assume Comprehensive Cancer Center? Anyway, the hospital in our town has a separate oncology center which is where he is being treated. To start over somewhere else at this point would not be possible. We would have liked to get a second opinion, but it happened so fast and my husband started feeling pretty poorly from the growing lump and the pain from the surgeries, as was not inclined to have to travel hours for another opinion and go through the whole process again.
So, today was second day of treatment and ended up to be another full day - he went in for 4 hours of fluids this morning to flush out his kidneys. In the meantime, we decided to try the amiphostine and he had the first dose today prior to radiation. Made him very ill and I think he is inclined to discontinue it already. His doctors indicate the response is not that good and the side effects are not easily tolerated so they did not encourage or even suggest it, but after I read about it and asked them, they said we could try it. I guess you don't know if it is going to work or not until the treatments are well underway. In the meantime, if it causes such nausea, my husband says it is not worth it. I had the doctor explain to him what the effects of damage to his salivary glands would cause, but he is in such misery right now, I am not sure he can make a clear headed decision, especially based on the fact that it "might help."
Thanks for "listening.
Michele