Topic: Hereditary bile duct cysts?

Hi Everyone,

I am wondering if anyone has any info/experience with bile duct cysts being related to malignancies? My husband passed away from cholangiocarcinoma in October at age 42, and his mother (age 70) was just diagnosed with a rare, congenital bile duct cyst that was giving her the same problems as his cancer: cramping pain in the chest. I found this article online that says they are passed from the maternal side: http://annonc.oxfordjournals.org/conten … 4.full.pdf

In any case, we don't have any more tissue samples from my husband, but I want to be on alert for my kids' sake. Apparently symptoms of the cysts are very common in childhood.

I am curious to find out if anyone knows anything about this or had this happen in their family?

Thank you!

Re: Hereditary bile duct cysts?

Hello Sweet green, I am sorry for your loss of your husband, I am a resected cc patient and recently an MRI indicated the site of  my bile duct resection is becoming restricted, and I questioned what to do,concerned this could be the beginning of it's return, the doctors all consulted one another, took a while and they came back with "it is scar tissue building up at the site of duct resection, if it becomes a problem, stent it." and he added, yours is a variety of cc that is "cyst like" I believe he said, and not to worry about it . ??Reading this article makes cystic bilary tumors worse than cc with equally bad survival numbers. I am very blessed in many ways, it seems my bile duct cleared itself, and I can eat chicken skin without pain if I wish (love it, can do a little ) So who knows ? If I had rushed to get a stent then they need bimonthly replacement and now you risk pancreatitis every time you get one.You are your own advocate and educate yourself and make your own decisions. I am the only one in my family with any symptoms of liver problems. I have not seen my onc since all of this, I am due in feb. sometime. Perhaps I will learn more then....best wishes, Pat

Re: Hereditary bile duct cysts?

Pat, Thank you so much for sharing your story. I wish we had done genetic testing on my husband to learn more about his disease. We didn't know it was an option! His mother's cyst was benign, for which we are grateful. I apologize if I alarmed you. I wish you many blessings on your continued journey of good health! Bridget