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Husband recently diagnosed with Cholangiocarcinoma and had no symptoms
Liver Cancer | Last Active: May 26 3:30pm | Replies (83)Comment receiving replies
My husband is 56. His only symptom was extreme fatigue. He thought he was having an unusually hard time recovering from a cold. He also had some itchy skin, which prompted his doctor to test liver enzymes, which were high. Fast forward...7.2 cm lesion on his liver, plus multiple other spots on his liver. Source is bile duct. We are 19 days since diagnosis. He has had 2 stents placed in that duct (first one blocked pretty quickly), and his first round of chemo (only 2 of 3 meds given due to high bilirubin and alk phosphate). I feel so lost. This has all happened so fast. I want to run to the "right" place...and I am not sure where that is. We are currently at Methodist in St Louis Park, MN. I have requested a 2nd opinion from Mayo...but I am pretty confident my insurance will not pay for it. Mayo is not in any level of coverage for us.
Replies to "My husband is 56. His only symptom was extreme fatigue. He thought he was having an..."
Hello. I don’t know how I found this thread today, but my young, healthy, handsome dad was diagnosed with cholangiocarcinoma late last Oct (2025). He went to the ER with severe side pain as well as vomiting & diarrhea. That night he was diagnosed with Stage 3. He was happy & vibrant when chemo began. He was always active, had never been overweight, never drank or smoked, was tall & lean with a thick head of hair. We thought without question that if anyone could kick this thing’s butt, it would be my dad.
Oh how wrong we were. The first couple of months of chemo, my dad was a champ, still busy in his office, in his yard, in garage, living his normal life. But his weight was dropping & he was already naturally thin. By March of this year, he’d had 2 blood clots from chemo & small stroke. Why they didn’t have him on blood thinners to begin with, I’ll never know.
In April they told my father he was too weak for any further intervention. Scans revealed that this aggressive monster of a cancer had already metastasized to his lungs, kidneys & bones.
He was tired, often in pain. He settled his affairs. We all slowly watched his life force drain. On a Tuesday evening in May, my father passed away.
I have never been so shattered, so broken & felt more alone in this world.
I’d like to connect with anyone who has experienced a loss at the hands of this vile cancer & know how you were able to move forward. All the best. n
@mnmbec
Do contact Mayo in Rochester. Ask then about your insurance coverage, and if they are out of network, hopefully they still can work with you.
I have bile duct cancer also, and had my surgery at Mayo Rochester. Dr Starlinger and his team were wonderful. Surgery was robotic.
Good luck to you.
@denvergirl
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My husband has intrahepatic cholangiocarcinoma. He was diagnosed last December. We chose to go to Mayo because of their reputation and my husband has medicare which is co ering a lot of the procedures. I understand if our insurance wont cover if you go to Mayo but maybe you can contact mayo and see if they can help or direct you. The surgeon we were working with is one of the best in his field so if there is anyway you can swing Mayo, I would try. It may be worth a call to them. We are very happy with the help we have received at Mayo. Good luck and prayers to you and your husband.