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.

journey2025 | @journey2025 | Apr 15 5:52am
In reply to @denvergirl "My very best wishes for his recovery." + (show)
@denvergirl

My very best wishes for his recovery.

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Thank you 🙏💛

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 21 9:22pm
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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@lynnliver, I'm sorry to hear that another primary cancer has been found. If you would like to get a second opinion at Mayo Clinic, here's how to get started: http://mayocl.in/1mtmR63

When are you scheduled to start chemo?

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sunflower88 | @sunflower88 | 1 day ago
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.

Jump to this post

Hi Lynn,
I would highly recommend Mayo in Jacksonville, FL.

My husband was diagnosed last May, 2024 with bile duct cancer. Caught early. He had a malignant 6 cm lesion on left lobe of liver. Mayo did 2 biopsies, one on the lesion and one on the middle/right side of liver. Diagnosed with HCC - Heptocellular Cancer Stage 1/Grade 2, the biopsy for his liver in the middle/right side showed the rest of his liver is good. He has a team of doctors/surgeons and PA’s. He had da Vinca robotic surgery on 6/24, 4 small incisions across the top of his abdomen and a larger incision in his belly button which is where the robotic arm went in, snipped the left section of his liver and pulled it out. The surgery was on a Monday and his was discharged from Mayo Clinic/hospital 48 hours later. In August, 2024 he started taking oral chemo capecitabine 2000 mg twice a day for 6 months. HCC cancer is rare and has a high recurrence rate. So far so good. Stopped chemo after 6 months, now on Mayo’s schedule every 3 months for MRI of abdomen, CT scan of chest, blood work to include tumor markers and meets with 1 or 2 PA’s after testing is complete to review results. He just had all of this done 10 days ago. No recurrence, and will continue with Mayo for a total of 5 years.

Mayo is wonderful, doctors/surgeons, PA’s, nurses, everyone is helpful. I cannot say enough about Mayo. You should definitely go there.

Good luck.
Linda

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1 reply
denvergirl | @denvergirl | 5 hours ago
In reply to @sunflower88 "Hi Lynn, I would highly recommend Mayo in Jacksonville, FL. My husband was diagnosed last May,..." + (show)
@sunflower88

Hi Lynn,
I would highly recommend Mayo in Jacksonville, FL.

My husband was diagnosed last May, 2024 with bile duct cancer. Caught early. He had a malignant 6 cm lesion on left lobe of liver. Mayo did 2 biopsies, one on the lesion and one on the middle/right side of liver. Diagnosed with HCC - Heptocellular Cancer Stage 1/Grade 2, the biopsy for his liver in the middle/right side showed the rest of his liver is good. He has a team of doctors/surgeons and PA’s. He had da Vinca robotic surgery on 6/24, 4 small incisions across the top of his abdomen and a larger incision in his belly button which is where the robotic arm went in, snipped the left section of his liver and pulled it out. The surgery was on a Monday and his was discharged from Mayo Clinic/hospital 48 hours later. In August, 2024 he started taking oral chemo capecitabine 2000 mg twice a day for 6 months. HCC cancer is rare and has a high recurrence rate. So far so good. Stopped chemo after 6 months, now on Mayo’s schedule every 3 months for MRI of abdomen, CT scan of chest, blood work to include tumor markers and meets with 1 or 2 PA’s after testing is complete to review results. He just had all of this done 10 days ago. No recurrence, and will continue with Mayo for a total of 5 years.

Mayo is wonderful, doctors/surgeons, PA’s, nurses, everyone is helpful. I cannot say enough about Mayo. You should definitely go there.

Good luck.
Linda

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Linda. I have a very similar story. Similar surgery with clear margins. I went to Mayo Rochester and was so pleased with my team there.
I too am taking capecitabine 3500 mg each day. Did your husband experience the hand and foot syndrome, and if so how did he deal with it? I use Udderly Smooth cream, but my hands and feet are quite dry and cracking and sore.
Thanks,
Mary "denvergirl"

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