When the diagnose was made we were in such shock and now in retrospect and reading how all of you are so informed I realize I need to know more. At first the report sated that it was SCC of the pharynx- on both the soft and hard palate - and later we were told the tonsils - T4N0M0. He did not have surgery to remove the tumor as it would of been very extensive surgery without knowing if they could get all of it. Therefore he had 35 chemo/radiation treatments which has left him without working salivary glands - no saliva - and he is pretty much on a soft food diet. We were told that it was a very agressive treatment.

My cancer was very similar - right tonsil, stage III/IV, T3N0M0. They told me the same thing -that the surgery would be too extensive and result in very bad quality of life issues, besides they would have to radiate everything anyway. I went with IMRT and Cisplatin and it's all working out ok so far. I have over 50% of my salivary function back and am cancer free at 18 months post Tx. Tonsil cancer is in the oropharnyx area. You mentioned tonsils - did he have cancer in both?

I am curious to hear that doctor will save radiation for recurrence. I would think that radiation should be considered in the first round treatment to avoid recurrence. Like Gary, I didn't have surgery to remove my tumors. In fact my stage of cancer was more advanced than Gary's as it was a T2N3M0 classified as stage 4b. My team of doctors did not suggest surgery since it would involve a very extensive area and would definitely affect my voice which was very important to me since I am a school teacher. I had 48 rounds of radiation (at full dose)plus 4 rounds of cisplatin concurrently. I lost all my saliva since I was not given IMRT. Like some of the patients here, I was rather ignorant about my illness and in fact I didn't know what I should ask and what my rights were. I only put my life in my doctors' hands. And very luckily, I am still alive with almost everything back to normal except my very dry mouth and loss of sweet taste. A price to give.

Karen.

I guess teh saved the radiation because when I first was dxed the lymph nodes just under my chin came back positive for SCC. They couldn't find the primary at first. Decided to do a tonsilectomy and then thats when they found it. It was not extensive and seemed confined to the tonsil only. They believed that they got it all because of good margins. After the radical neck disection, there were 3 of 33 lymph nodes positive for SCC. Now you all have me wondering that maybe they should have radiated me then. I remember the Dr saying I would only have one shot with radiaiton and he felt at that time to wait since the primary was confined to the tonsil and he believed he got it all. I quess with this disease nothing is for certain nor is there any real set in stone treatment that quarentees success.

I was having a philosphical discussion with my Head & Neck surgeon last week at my 1 1/2 year check up about why some have recurrence and some don't and he bluntly stated that it's more luck involved than anything else.

Being a Christian however, I don't believe in the concept of luck but I can understand the randomness of the outcome of this dreadful disease. You can bet that there are multidimensional issues and, more than likely, a combination of them.

in a similar philosophical discussion with my sister's oncologist, he kept stressing that in his experience recurrence is more likely if the person is under a lot of emotional and physical stress, and that response to treatment is better when the person keeps a positive attitude. this seems common sense to me though i'm sure stress and anxiety are not the only factors involved. the pitfall of this view, of course, is that it places more burden on the persons with cancer so that somehow they could conceive themselves being responsible if they have a recurrence!

gita