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

I thought I'd come join this little private band. Nice to know we won't be fighting to take turns to post seeing how we all have had to come up with something rare so as not to be like the other kids! 🙂 I'm Marcia and I'm a new member of this group. I only remember Super Bowl Sunday here in the Twin Cities because I was having my gallbladder removed due to gallstones! At least I didn't have to worry about fighting all the tourists! Little did I know that I'd get the news that I had cancer which put a big dent in my newly started retirement. I've done less than 2 months of FOLFOX which was disastrous. Neuropathy, as well as hand-and-foot syndrome, were the biggest bug-a-boos that I'd happily have never known about! My 95-year old mom bugged me to come to Mayo for a second opinion. They wouldn't see me until my round of chemo was done so they could see how useful it was. (I think I mentally refuse to "remember" the lingo because I don't want it to become my "normal"). They did make recommendations that my "poison of choice" as it were be changed and have decided to do surgery on June 7th as I've got intrahepatic cholangiocarcinoma left to deal with a staging of IIIB. I'd rather be number 1, but I didn't get asked my preference. We'll see how it goes. Nice to know that I'm not sitting by my lonesome, but I'd rather be sitting around the campfire roasting marshmallows with the rest of you under a totally different pretext!

@lisamb, I want to welcome you and your husband to Mayo Connect. I am happy that your husband is now activated on the transplant list. As a liver/kidney recipient, I can remember that time of my life. My husband and I used to constantly check to be sure our phones were still properly working!

I would like to invite you to also look at the Transplant Discussion Group where you will meet others who are also waiting for their transplants. You are among friends here on Connect. We share, we encourage, and ask/answer questions. Join in any where.
https://connect.mayoclinic.org/group/transplants/

Prayers for strength and for patience.
Rosemary

My husband was diagnosed with cholangiocarcinoma the end of January 2017. He has had a couple of episodes of infections along this journey that has required hospitalizations. For the most part he has been doing pretty good all things considering. He even continues working part time. We are doctoring at mayo in Rochester. Because of the numerous infections he has been off chemo pills since July and has been on antibiotics ever since November. He is now at meld 31. He had his staging 3 weeks ago and all went good! He is now officially activated and we have our phones on 24/7 waiting for the call of a liver available! My husband has stayed very positive thru this journey we are on...me I've had ups and downs which is to be expected. We live 80 miles from Rochester and feel very fortunate for our close proximity. I just found this web site a few days ago and this being my first post. If there are any questions, don't hesitate to ask.

Thank you for the info.

Hi @krishh How are you doing? Have you received any more information about next steps for treating the metastasis? Is it brain or bone metastasis? Have they determined that yet?

Jerry @jerrydrennan
Staging can be a confusing concept. Simply put, staging is a set of tests done to find out how much cancer is in the body and where it is. Your cancer team will gather lots of different information to determine the stage from tests like:
- blood tests
- imaging studies: like CT scans, MRIs or ultrasounds are a few example of common imaging studies. Cholangiogram is a special imaging test that looks at the bile ducts to see if they are blocked, narrowed, or dilated (widened)
- biopsy: this is when a tissue sample is taken from the gall bladder to examine the cells under a microscope

You mentioned that you have perihilar bile duct cancer. That means is started in the hilum, the area just outside the liver. You also said you have stage 1, which means that the cancer has grown into deeper layers of the bile duct wall, such as the muscle layer or fibrous tissue layer but that it has not spread to nearby lymph nodes or to other parts of the body.

According to the American Cancer Society's website "For some people with unresectable intrahepatic or perihilar bile duct cancers, removing the liver and bile ducts and then transplanting a donor liver may be an option. In some cases it might even cure the cancer."
You can read more here: https://www.cancer.org/cancer/bile-duct-cancer/treating/surgery.html

Does this help explain the staging process? Since you have already been told that you have stage 1, what other staging tests do you have to have?

I'm not sure , I don't have psc or uc or chrones. All I have is the tumor. So I'm not sure where I fit. Maybe I fit in all of this or I don't. I have not found anyone. They all have had other issues that I do not have hence de unos. What I have figured out is the transplant is just apart of the journey with more to come. But thank you for that site ,yes it is information and inspiring. But what a roller coaster this is.

@jerrydrennan, Here's what I just found!
I want to share a patient story from the Transplant Pages about a patient with PSC and cholangiocarcinoma. https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/

Be sure to read to the end where you will read: "To learn more about Maikki's story, visit the blog where she and Jenifer share their thoughts on organ donation: http://www.liversisters.com/." You will find a variety of good information in Blog, Resources, and also a Contact Us section.
Let me know if this gives you anyone or anything to help you.
Rosemary

I have been diagnosed with de novo perihilar cholangiocarcinoma . I am at stage 1 the tumor is at the edge of the liver. non resectable. I have been listed for a transplant. I have been focused on the transplant forum. I have checked this forum and found this discussion. I got in wrong I am still learning this communication forum. I have gone thru the chemoradiation and brachey treatment as I wrote earlier. I have read these post over and over several times. the more I read the more questions I have . I have been on xeloda treatment since june of 17. I have hade side affects. I am not sure if I fit the category. there appears to be multiple stages which have not been discussed with me yet. I thought the journey was the transplant. there appears to be more. I have not had any one to talk to out side the DR office until last week when I found this while looking for answers. this seems to be longer issue than I expected. i have realized i don't have much to add but more to learn.

I am not sure what happened but it posted to soon
I have done everything chemo radiation treatment with chemo infusion 5FU. Then did brachey treatment in the middle of the chemotherapy radiation. I am listed for a transplant But not activated . I am on Xeloda and have side effects. I am meeting with surgeons in. May for staging. Not sure how it works but they will check I found the cancer has spread. Metastasis they call it.
At that point I will find out if I get a chance at transplant. Or I have to go another route. I can offer what help I can give. Prayers and friendship is always there for you.