Warren,

I had Stage II tongue cancer on the left side and had radiation on both sides of my neck (after some debate and disagreement about it). I think they might have directed a slightly higher dose to the left side but I'm not sure. You don't mention if you had a neck dissection and whether it was on just the left side or bilateral. If you haven't had that, there is actually some chance that there is cancer in your nodes that can't be seen on a CT scan so it's really extra important to get both sides of the neck radiated.

I also had concurrent chemo (cisplatin) which made the whole radiation treatment thing MUCH worse than it would have been otherwise. But I don't regret having it. Since you have stage 1 tumors, I guess I can see why they are saying that's not necessary although, with a recurrence, I would want to throw everything at it that I could.

In terms of figuring out whether treatments which have not been tested on early stage cancers would help, my medical oncologist (who used to be at Sloan but moved up here to the country to raise his kids) told me that as a rule of thumb, if research shows some treatment has a certain rate of effectiveness with more advanced cancers (e.g. reduces rate of recurrence by 10%), you look at how the early stage rate of recurrence compares overall (e.g. for stage II it's about half of what it is for stage III/IV) and apply that ratio to the effectiveness of the treatment (so if chemo reduced rate of recurrence by 10% for more advanced cancers, you can estimate at least a 5% reduction in recurrence for a Stage II). Five percent sounded good enough for me to want the chemo, alhtough it wasn't, and isn't, standard protocol for a stage II cancer (but there's some disagreement among experts about whether it should be and the medical oncologist I saw for a second opinion, at Dana Farber, definitely believed it should be when there was some additional risk factor involved). You may want to talk to your medical oncologist more about this. Chemo alone is not so effective at getting rid of oral cancer but it's very powerful when used with radiation--and you only get to get radiation once!

I taught a course online thruogh the first four-five weeks of my treatment. But I really just barely kept on top of it, it was far from full time work, and I didn't have to deal with anyone in person or go into work. Again, I think I might have done better had I not had the chemo because it made me so constantly nauseated and one of the meds I took for nausea (compazine) made it literally impossible for me to read and comprehend what I was reading (I have no idea why).

As for the difference between treatment for tongue and throat, I have a friend whose husband was treated (at Sloan actually) for throat cancer about six months after my treatment ended. he has had a much easier time with recovery and I think part of it may be he didn't get as mich radiaiton to his mouth and has had much less severe mouth pain afterwards than I have had. Also he has all of his tongue whereas I don't and have a very restricted range of motion in the tongue I have left (worse after rad)so that has contributed to swallowing problems for me and he has no problems with that. It's ironic because he had a much more advabnced stage but he has had way less problems from the treatment than I have. But I'm not sure that's all due to the tongue/tonsil difference or other things as well.

Nelie