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Husband recently diagnosed with Cholangiocarcinoma and had no symptoms

Posted by mscluppy @mscluppy, Dec 23, 2024

My husband was recently diagnosed with Cholangiocarcinoma. We were referred to Mayo and have our first appointment in a week. What I don't understand is why blood tests taken the end of Sept were all normal range. Lesion was found on the liver by accident otherwise no symptoms. They say it's about 8cm which is quite large. We don't know what to expect and it's scaring me. I'm assuming the size would mean it's more advanced. Can anyone share their experience if it's similar?

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Teresa, Volunteer Mentor | @hopeful33250 | May 26 6:34am
In reply to @kittbould26 "@mnmbeck Hello. I don’t know how I found this thread today, but my young, healthy, handsome..." + (show)
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@mnmbeck

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

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Hello @kittbould26 and welcome to Mayo Clinic Connect. I am so sorry to hear that you lost your dad to cancer. I can understand your need to connect with others.

On Mayo Connect, we have a Loss/Grief support group. Here is the link to that discussion:
https://connect.mayoclinic.org/group/loss-grief/. After my dad passed away, I began a discussion that might be helpful to you. Here is a link to that discussion.
https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/
Share, as you would like, some memories of your dad. It sounds like he lived life fully.

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denvergirl | @denvergirl | May 26 3:20pm
In reply to @mnmbeck "My husband is 56. His only symptom was extreme fatigue. He thought he was having an..." + (show)
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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.

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@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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denvergirl | @denvergirl | May 26 3:30pm

@mscluppy
My story is very similar to yours. My bile duct cancer was also found by accident on an ultrasound of my gallbladder. I had surgery at Mayo Rochester Oct 2024. Dr Starlinger was wonderful and the surgery was robotic. The tumor was well defined within the liver, but unfortunately it did come back. I took Capecitabine for 6 months but it did not work well. Then cis/plat durvalumab chemo for 6 months and that did not work well either. I am now on a Trial Drug with the Sarah Cannon Research Institute. Hoping it works!
And my blood tests were pretty normal also.
My best wishes to you both.
@denvergirl

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