1. < Liver Cancer

Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

Posted by egoodies @egoodies, Aug 14, 2023

Anyone currently battling bile duct cancer? I would love to speak to discuss your experiences. I was just recently diagnosed in June.

Interested in more discussions like this? Go to the Liver Cancer Support Group.

denvergirl | @denvergirl | Mar 31 12:25pm
In reply to @journey2025 "Dan, Please tell me more about your surgery and recovery. My husband had his surgery on..." + (show)
@journey2025

Dan,

Please tell me more about your surgery and recovery. My husband had his surgery on March 3, 2025 and we are still hospitalized. It seems he keeps having one complication after another. What’s a realistic expectation, please advise. We were happy to hear the surgery was a success with negative margins.

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Denvergirl...Very sorry about the unexpected complications. I had surgery last Oct at Mayo Rochester for bile duct cancer. I was lucky, clear margins and left the hospital on day 3.
I hope you are better soon.

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1 reply
denvergirl | @denvergirl | Mar 31 12:31pm

Are you taking Capecitabine?
I am taking it prophylacticly after successful bile duct CA surgery.
I am experiencing significant neuropathy in feet and hands after 5 three week cycles.
Anyone else dealing with this, and if so, any suggestions for improving it?

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journey2025 | @journey2025 | Apr 1 8:21am
In reply to @denvergirl "Denvergirl...Very sorry about the unexpected complications. I had surgery last Oct at Mayo Rochester for bile..." + (show)
@denvergirl

Denvergirl...Very sorry about the unexpected complications. I had surgery last Oct at Mayo Rochester for bile duct cancer. I was lucky, clear margins and left the hospital on day 3.
I hope you are better soon.

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Denvergirl, congratulations on your successful surgery with clear margins! My husband’s surgery was over 14 hours with negative margins. Our complications started on day 7. Today is day 29 ~ I am believing he will be healthy enough to go home this month. 💛🙏💛

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1 reply
denvergirl | @denvergirl | Apr 2 11:11am
In reply to @journey2025 "Denvergirl, congratulations on your successful surgery with clear margins! My husband’s surgery was over 14 hours..." + (show)
@journey2025

Denvergirl, congratulations on your successful surgery with clear margins! My husband’s surgery was over 14 hours with negative margins. Our complications started on day 7. Today is day 29 ~ I am believing he will be healthy enough to go home this month. 💛🙏💛

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Did he have bile duct reconstruction? If so, that is lots more complicated than my liver resection.
Wishing you both the very best. Are you at Mayo?

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1 reply
journey2025 | @journey2025 | Apr 11 11:46pm
In reply to @denvergirl "Did he have bile duct reconstruction? If so, that is lots more complicated than my liver..." + (show)
@denvergirl

Did he have bile duct reconstruction? If so, that is lots more complicated than my liver resection.
Wishing you both the very best. Are you at Mayo?

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Yes, bile duct reconstruction too. He is still in ICU with complications. No, not at Mayo. Our intentions, but he was hospitalized a week prior to go to Mayo with Cholangitis. Still struggling with infections. Praying for GOD’s healing hands.

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denvergirl | @denvergirl | Apr 12 9:42am

My very best wishes for his recovery.

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lynnliver | @lynnliver | Apr 13 9:27am

Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last February 2024 for stage 1 breast cancer but this is not metastatic breast cancer. Primary site is liver. My breast oncologist found it bc elevated tumor marker numbers prompted a CT scan. Then Biopsy. Being seen now at Emory Winship Bile Duct Cancer center since I live in Atlanta . Seeking best place for 2nd opinion. Considering Mayo Jacksonville or Moffitt in Tampa but can realistically go anywhere. I would appreciate any feedback about experiences. I feel fine now but chemo is to start soon. Been there. Done that. Not looking forward to it.

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4 replies
demooretucson | @demooretucson | Apr 13 11:59am
In reply to @lynnliver "Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last..." + (show)
@lynnliver

Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last February 2024 for stage 1 breast cancer but this is not metastatic breast cancer. Primary site is liver. My breast oncologist found it bc elevated tumor marker numbers prompted a CT scan. Then Biopsy. Being seen now at Emory Winship Bile Duct Cancer center since I live in Atlanta . Seeking best place for 2nd opinion. Considering Mayo Jacksonville or Moffitt in Tampa but can realistically go anywhere. I would appreciate any feedback about experiences. I feel fine now but chemo is to start soon. Been there. Done that. Not looking forward to it.

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Take a look at Mayo Rochester as well. Good luck

Dan

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lucian | @lucian | Apr 13 4:13pm
In reply to @lynnliver "Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last..." + (show)
@lynnliver

Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last February 2024 for stage 1 breast cancer but this is not metastatic breast cancer. Primary site is liver. My breast oncologist found it bc elevated tumor marker numbers prompted a CT scan. Then Biopsy. Being seen now at Emory Winship Bile Duct Cancer center since I live in Atlanta . Seeking best place for 2nd opinion. Considering Mayo Jacksonville or Moffitt in Tampa but can realistically go anywhere. I would appreciate any feedback about experiences. I feel fine now but chemo is to start soon. Been there. Done that. Not looking forward to it.

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Can’t say enough good things about Mayo in Jacksonville
I just start for treatment of Hepatocellular Carcinoma
Plan is to operate this May 21 ..
Lou

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denvergirl | @denvergirl | Apr 13 5:43pm
In reply to @lynnliver "Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last..." + (show)
@lynnliver

Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last February 2024 for stage 1 breast cancer but this is not metastatic breast cancer. Primary site is liver. My breast oncologist found it bc elevated tumor marker numbers prompted a CT scan. Then Biopsy. Being seen now at Emory Winship Bile Duct Cancer center since I live in Atlanta . Seeking best place for 2nd opinion. Considering Mayo Jacksonville or Moffitt in Tampa but can realistically go anywhere. I would appreciate any feedback about experiences. I feel fine now but chemo is to start soon. Been there. Done that. Not looking forward to it.

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Denver girl... I too have colangiocarcinoma. Luckily mine was discovered early and I had successful surgery. I am not familiar with Mayo Jacksonville, but I was treated at Mayo Rochester, and I cannot recommend them highly enough. My purple team was fantastic.
And Mayo Rochester is a world leader in treating this disease. Do consider them. And best wishes to you.

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