Welcome to OCF. You have been through a lot and face some tough road ahead.

I'm glad to hear you got the early 2013 scan as that was a lifesaver in spotting the metastasis to the lungs. The trend to skip scans post tx is worrisome and even in your case it was 6 months between the first scan and the followup.

The fact 6 months went by before new treatments start sounds scary but in fact, the first scans showed the mets to the lungs. It is pretty rare that distant met recurrence is ever killed; nearly every case treatment is palliative rather curative, even when surgery or rads are done on the lung tumors.

I just had this discussion with my primary ENT who does a scope and grope on me every six weeks. He wants to do a scan at 12 months post (I did have an initial PET/CT done 12 week post) so it is about 9 months between scans.

His philosophy seems harsh but pretty logical. Once you have distant mets then you are in very deep doo doo. It is highly likely that treatment is palliative so you are just running out the clock. From a broader vantage point, it just becomes a question of how much time did you get on the clock.

Sorry if this sounds raw but it is how I do view recurrence should it be dealt to me. Just makes me enjoy every day as much as