Wouldn't it be nice if the hoards of "specialists" really knew what they were talking about with their decades of 'experience'...?

As easily evidenced by the fact that not one team has a consensus with any other CCC team, no one way is the right way to treat this terrible disease.

So far, the only tried and proven methods are a disgrace to humanity and have horrible, unacceptable failure rates, not to mention barbaric, centuries old technologies.

I understand the points made by many about all the "wonder drugs" that come and go, but frankly I am willing to take an educated risk if it makes sense.

It's too bad that every team I've seen gives me different prognosis, treatment plans and protocols, otherwise my decisions would be easier and faster.

I am using the healing time post-surgery (when no treatment can be done yet anyway, since I had the surgery just two weeks ago) to determine what I think is best for my long term survival, and hopefully learn more about the right way to beat this dreaded curse.

I am having my tooth extraction done on Tuesday in SF, and expect little swelling, etc since I've had these same teeth removed on the other side with no problems.

I have simulations and mask making etc tentatively scheduled once I have healed from the tooth extraction. (1 to 2 weeks)

IF I hadn't traveled around the country, I would not have ever known to have the teeth removed in the 1st place, since the rad team at Stanford has never even asked me to see a dentist, much less have one on staff.

So, I learned quite a bit in my travels and have a better handle on things then I did before, not the least of which is having the surgery was a BIG MISTAKE. My hope is that my information gathering will be useful to others as well.

Despite the surgeon's protestations to the opposite, the other ENT's I have seen say the surgery was unneccesary, and it looks as though he didn't get all of the primary anyway (or it's so agressive it's grown back measurably in less than 2 weeks post op).

I don't think Stage IV automatically precludes a patient from being a good candidate for IMRT, at least a couple of the best Radiation Oncologists I've seen have said they would prefer to use IMRT if the trials permitted, and this is even after noting the perinural involvement, mets to the 3 nodes, etc.

All this goes to show you that there is SO much left to learn about this disease and even the world's best are very much in the dark.

So much of it is chance, guessing and hope.

Then, when you weigh the possible conflicts of interests, (this Dr in on payroll for this drug company, this school receives grants from this radiation equipment company, etc.) It is not so cut and dry.

I don't have blind faith in the medical establishment and will continue to question everything, with the goal that it doesn't interfere with my success.

This is why this forum is one of the most beneficial resources for anyone facing or dealing with oral cancer.

The strength of this board is in the feedback, responses and input from everyone and I appreciate this more than I can ever express here.