I connected with others with hepatic adenomatosis a while ago on facebook. No specific group for that,, just the hepatocellular adenomas but we find each other there. I feel like it's about half of us with adenomatosis who were told we had metastatic cancer initially. Some doctors even gave non-life expectancies, no you have about 6 months, but moreso you won't be around for the next X. It's really amazing how many doctors just sort of throw in the towel with us and say these things without verification.
It's not even like there's much that matches with metastatic cancer - tumours, sometimes anemia, sometimes slightly elevated white cell count, sometimes elevated liver enzymes. My hematologist put the pieces together - didn't know what it was, knew metastatic cancer wasn't right and liver cancer wasn't a fit either. More doctors really need that sense too.
I also think we get short shafted afterwards. The liver docs - whether it's surgeons or hepatologists aren't connected to the news we were given initially. We don't get the type of resources that come with a cancer diagnosis. The Canadian Liver Foundation doesn't even have anything, I submitted a question on a Q&A session and the experts won't even say adenomatosis.
Just my rant after seeing another person who was needlessly traumatized by a doctor.