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Bile duct Cancer

Arizona
Posts: 1
Joined: Oct 2012

I'm looking for anyone told they have Metistatic Bile duct cancer with no tumors in the Bile Duct. My husband was diagnosed with Pancreaticbiliary cancer of and unknown primary with no tumors in pancreas or bile duct, second opinion at Sloan says tumor in liver is Bile duct cancer. We had a Pathwork that said 27% Pancreatic and 24% Ovarian. He is 49 and has 3 tumors in his liver, 2 small tumors in his lungs and multiple lymph node involvement. I can't find any research that outlines any case of this. Everything has tumor in the bile duct. We are looking for someone with the same situation.

northa914
Posts: 89
Joined: Mar 2011

I have stage IV bile duct cancer (cholangiocarcinoma) with mets to my liver, spine, and possibly my pancreas (a new development this year). After an attempted liver resection in May of this year, my doctors also found neuroendocrine cancer in my lymph nodes. My bile ducts are clear, I've never presented with the typical symptoms and never had bile duct blockage. My biopsy and CA 19-9 tumor marker are the only evidence that I have cholangio. My oncologist would like to do another biopsy, my liver specialist at USC-Norris doesn't feel it's necessary (City of Hope was my second opinion when I was diagnosed in June 2010). I'm currently on my third type of treatment (Gemzar/Cisplatin, Gemzar/Xeloda/ now FOLFIRINOX). At my last appointment, my oncologist again questioned what type of cancer I actually have (cholangio that morphed into NEC or NEC that's metastasized to my liver). She said my case is odd as most people don't do as well as I have with this disease (cholangio). I was 48 when I was diagnosed and told I would make it through the summer. Flash forward 28 months and here I am, still trying to figure out what I have and need to be treated for, leading a basically normal life in spite of the cure and the disease(s). I'm a single mom with two boys who I live for, and if it wasn't for them I don't know if I'd fight as hard as I am. I don't log on as often as I used to to this website, so if you'd like to contact me the best way is via email. I'll send you a private message on this website with the info. Take care, I hope this helps!

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