After I was diagnosed that it potentially spread to the lungs (with a PET scan), I went in for a biopsy and they said there was chance that if it came up malignant, they might have to remove some of the nodules while they were in there. Turns out there were a lot of malignant nodules, so they removed part of my left lung as that had the most nodules. My right lung was basically clear. They did 5 incisions into the lung to get it all.

It's curious that none of the three cases you know about resulted in surgery. Makes me a bit suspicious now of my surgery, although the thoracic surgeon was reputed to be the top one in the Northwest. I'm guessing it was due to the large number of nodules and the fact that I'm a Gleason score of 9.

It doesn't surprise me that you haven't heard of any other cases after 5 years of meetings. I'm having trouble finding anyone that had it spread to the lungs, even on the prostatecacer.net forum.

For now, the Abiraterone and Lupron is keeping the nodules in check and some have actually shrunk, but this is a temporary solution. The cancer will eventually become resistant to the drugs and I'll then be faced with more life altering treatments such as chemo, Pluvicto, or who knows what else. On the plus side, my oncologist has patients that have made it 5 years on these drugs and even has one that is going on 10 years (but I'll bet they weren't a Gleason score of 9).

I still hoping to find a few in my situation in this community.

Thank you much for your reply.

Tom