Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Thanks for the recommendation on website research. Will be happy to share progress on my journey.

Hello,
This is my 1st time posting, I’ve read a lot of post and wishing everyone positive vibes. I just wanted to share my journey in case it helps anyone in any way. I’m 52, I was diagnosed with Bile duct cancer / CC in April 2023. I have PSC/Ulcerative colitis, so I was getting regular blood checks every 3 months. I had no symptoms, but my liver enzymes were elevated. My gastroenterologist did an ERCP with biopsy and cancer was detected. I was referred to Mayo AZ to get a full evaluation. I did radiation and Chemo treatment at the same time; 2x a day (morning and evenings); 34 total sessions. Once they confirmed cancer had not spread to my lymph nodes, I was activated on the liver transplant list. I had the Whipple procedure and a liver transplant at the same time on 9/1. I’ve had a couple hiccups along the way, but nothing major. Still dealing with some discomfort/numbness around incision area hoping as time goes by it gets better. If anyone has any questions, feel free to reach out.

~Berta

@berta929, that's quite the surgery having both the Whipple procedure and liver transplant at the same time. How long were you in the operating room? Are you now considered cancer free?

Hi @colleenyoung ,
The surgery was scheduled for 12 hours but they finished in under 5 hours. It went very smooth no complications, thank god. At this point I am considered cancer free. Mayo has been amazing from the beginning and continue to be, as I'm still under their care since my case was a little out of the norm they wanted to watch me until my 1 year follow-up.