Thank you all for your stories.  It has been an awful year. 
Amy,Lainy,Gavin, Eli.  Thank you for your stories.  It is so nice to know I'm not alone.  It is not a site any of us wish to find ourselves on.  Yet it is good we give this disease a voice.  It's rare but can't be ignored.

Pamela, it is exceptionally confusing when this happens in our children.  Horror.  I've been working for 21 years in the medical field and am just now learning never to ignore (mildly) abnormal liver functions.  If nothing is found.  Check another way or in a few months.....  You are all right, we can't beat ourselves up over this.  We must forgive not hold bad feelings in our hearts.

Marion, We did see Dr. Cleary and Dr. Knox and the great minds here in Toronto.  Unfortunately nothing could be done and chemo wasn't an option because of low platelet counts.  He passed 2 weeks ago.  He was quite well up until the last two weeks.  I hate this disease.

Then I had my own liver resection 4 weeks ago for what was thought to be cholangio (Dr Ian MacGillvray - TGH) and actually was Intraductal Carcinoma in Situ.  What a crazy year.  But I am recovering and off work for 3 months.  Now I have a real interest in this disease. 

Thank you for maintaining this board all.  I will be donating to this research and handing out wrist bands by the dozens.  At least for now we have each other.

God bless you all and please continue the fight or supporting your loved one in this fight.  Love hard, Fight hard, give hard.  Forgive.   And ask lots of questions. 
B

This is what I had.  I am 46 and 17 days post op Left lobe liver resection.  The pathology came back as intraductal papillary carcinoma in situ.  I think not much is known about this disease except that it is a variant of cholangiocarcinoma?  Or a precursor?   I was scared for a long time because the MRI pointed toward CCA. (it was found on an ultrasound for something else - I have no symptoms)  But my ex-boyfriend has PSC and is suffering with this cancer now.  So I am no stranger to this disease.  So how much is known about this?  Is there NO risk of recurrence after surgery?  What are the 10 year survival rates?/outcomes?

Any information is appreciated.

My boyfriend was diagnosed with primary schlerosing cholangitis (PSC) 3 years ago.  He has been under supervision since then.  Ultrasounds to screen for cancer.  This August, he got an MRI to follow the PSC.   They found he had cholangiocarcinoma (CCA) that went undetected by all the ultrasounds.  The day he got that phone call was the day our worlds changed forever.  Now everyday is defined by cancer.  It's inoperable.  I'm sick about it.  I'm a physician and thought I did everything I could to prevent this.  I am reading all these stories of people with CCA.  I thought it was mostly PSC patients that got this disease?  How did you get diagnosed?  How is it possible that we can catch this disease earlier so people can beat this?