I've been following this thread with interest as I'm one of the unknown primary people. Noted particularly your comment about 10 years ago/smaller institutions, Brian. All of my doctors at St. Johns in Santa Monica, including my UCLA professor MO, told me that occult primaries weren't all that uncommon. And that - and this seems counterintuitive but there you have it - I could expect to do better with the unknown status than if the source of the cancer were found. Before my triple endoscopy my ENT told me that he didn't expect to find anything, and in fact he didn't.

I expect it's all a question of statistics. I'll be having another PET/CT in November and I'll be sure and ask my RO about this issue again.

Interestingly, when I first found a large lump under my jawline it was biopsied negative. It was only after my first surgery to remove what I'd been told was a branchial cleft cyst that the SCC was discovered. In fact the ENT who did the FNA (not the one who finally operated on me) told me that the fact that he got a syringeful of fluid from the initial mass was a good sign that it was in fact a cyst. (believe I've written about this before) It was all very puzzling to me at the time!

Continued best to you, l&l.
David 2