Cholangiocarcinoma Bile Duct Cancer: Want to share experiences?

I was also diagnosed with hilar cholangiocarcinoma in June 2024. In 9 months I still have no positive test showing cancer and yet I had 7 ECRP's with brushings for biopsy, 5 CT scans with and without dye, 2 MRCPs, ENDUS, Colonoscopy, left and right lower lobe external biliary drains and exchanges over the past 9 months... all testing comes back negative for CANCER. I went from 135# down to 90# in a matter of a few months. As a retired RN, at 65 yrs I am sad to know this is my journey at this time. Transplant and resection are not an option and they wish to start me on chemo. After the first presumptive diagnosis from one hospital, I checked with two others, only to come up with the same conclusions. Since I understand what my short future holds for me, I am getting my affairs in order and have decided to donate my body to science. Maybe they can find useful information with the next person whom is dx with bile duct cancer / hilar cholangiocarcinoma.
Deb RN

Deb, this post made me cry. My mother was 64 when diagnosed and she died at 65. She refused chemo because she also had an autoimmune disease (she also just didn’t believe in chemo), but I have been reading more and more success with using the chemo than before. My mother never tested positive for bile duct cancer even though we were told she had it by three major hospitals. Her CA19 levels were elevated though (they went back down after radiation). The bile duct cancer did not really spread, but eventually she died of kidney failure. She had many pre-existing conditions, but she required many bile ducts stents that essentially led to so many organs not working (she of course, had many pre-existing conditions that ultimately led to her poor prognosis. I am rambling on, but basically what I want to say is do the chemo and fight. If you have children, write down all the family recipes. Say the things you want to say. We cared for my mother every day, but we never wanted to face the reality that she might die so there were many things I wish I had asked. We were waiting on God to provide a miracle that never came, but it doesn’t mean that it can’t happen for somebody else. I will keep you in my prayers.

Thank you so much! I was 64 in June, when they told me I have hilar cholangiocarcinoma, and turned 65 this past 29th of December. I start chemo this coming Wednesday. Wish me luck!
Deb

Happy to hear your going to try chemo and its not easy
for me handling side affects but most people tolerate it ok and i hope it works.

@djjnurse, how are you doing on chemo? How are doing today?