Thanks for all the input.

I saw both the oncologist and radiation oncologist on Friday.

Bottom line - it was squamous, and as far as they are concerned most likely to be Metastatic Squamous Carcinoma from Occult primary lesion.

So radiation therapy seems the most logical course.

I brought up the point that IMRT seems unlikely to be prescribed unless a primary was found. The rad. onc. was quite insistent that I should not subject myself to the the normal radiation unless it was absolutely necessary (in an effort to save my salivary glands). He recommended strongly that I get a US opinion on the IMRT. He also suggested that the cost in the US would be similar or less than in Canada.

Gary, he mentioned that he knew of someone who had IMRT done at UCSF for around $100,000. Could the cost have dropped so dramatically in just 18 months? Does anyone have any current costs available?

I certainly would love to avoid frying my salivary glands if at all possible. However, realistically speaking, from reading the comments on this board and elsewhere, I see no indication anywhere that IMRT is currently being used where no primary can be found. Considering that this same rad. onc. is running an IMRT experimental program (I think for carcinomas of the oropharynx), you might think he would be in a position to know, but....??

I know it is a red tape nightmare for them to treat me at Princess Margaret, simply bacause I am not resident here and not on the state run health plan. I even asked the rad. onc. if he was trying to avoid treating me (he denied it).

Even if I start the process tomorrow it will take a further 3 weeks before I can start treatment (includes work-up time etc).

If not for the fact that I have so much potential caregiving resources available to me in Toronto (2 sisters, parents, a place to stay, and a place my wife can come to stay) I think I would be down in Florida at Sylvester, as KirkGeorgia has suggested.

I get the feeling that the caregiving may be quite crucial, however, and worth wasting another 2 weeks over.

My inclination is to put things in motion here to get the red tape unwound and in the meantime to try and get an opinion from Sloan Kettering or MD Anderson on the use on IMRT in my situation. I figure if it is being done, then the big centres should know about it.

Any comments or advice would, as usual, be more than welcomed.

Thanks to everyone. It's so nice to have somewhere to turn where you know you will get some honest feedback (even when it's something you don't necessarily want to hear).

Best,
tower