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Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

Liver Cancer | Last Active: 6 days ago | Replies (86)
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@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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Replies to "Recently diagnosed with Stage 4 colangiocarcinoma. Absolutely no symptoms or risk factors. Was treated until last..."
demooretucson | @demooretucson | Apr 13 11:59am

Take a look at Mayo Rochester as well. Good luck

Dan

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lucian | @lucian | Apr 13 4:13pm

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

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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Colleen Young, Connect Director | @colleenyoung | Apr 21 9:22pm

@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 | May 4 1:03pm

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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