Before my dad got the '"official" diagnosis of CC, the docs said it could be either pancreatic cancer or cholangiocarcinoma - interesting, they never used the phrase bile-duct. Up here in the northwoods, the docs hadn't really experienced many cases of cholangiocarcinoma/bile duct cancer. Further, while dad rehabbed at the nursing home, they charted him as having pancreatic cancer never changing it despite the doctors or myself attempting to correct it. X-rays showed that while the liver, kidneys, etc were affected, his pancreas was in pretty good shape?!?! Go figure!
I bumped into an aide that worked with dad at rehab, commenting on Patrick Swayze's passing of pancreatic cancer. She mentioned how dad was the only person she knew of that had PC. Oh well, other than pointing out the differences in an attempt to bring awareness, what can one do?
Even when dealing with insurances, other med agencies, etc...no one heard of cholangiocarcinoma, and it was difficult to obtain info or get services or get answers. UGH! Not until I found this site...thanks be to God and his angels at this foundation.
So, I wish you well on your search...be vigilant, and be strong!
"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain." ~g. b. hinckley