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

Hi Kris - This is an addendum to my previous post. Please send me a private message.

I just learned Thursday that my cancer has matestacized to my head. I have a tumor on the bone in the left, frontal lobe. This is highly unusual with this type of cancer I am told. A little scary, for sure. I feel grateful I have no symptoms yet - no headaches or vision changes or mood swings. No new treatment will happen, as I am high risk for surgery and am not crazy about the odds of radiation at this point either. So will continue with chemotherapy at this time, and repeat the MRI and CT scans at the end of April to determine any progression of disease. God bless all ~

Hi @krishh,

I'm so sorry to learn about his development. You're correct in noting that this kind of brain metastasis is extremely rare with cholangiocarcinoma. In fact, I found an interesting article about this rare occurrence which you might wish to read: https://www.hindawi.com/journals/crigm/2017/7156838/

I may be wrong, but after reading through your previous posts, I truly feel your strength lies in the fact that it's not about fight, or chances, or resilience; it's about acceptance. I cannot help, but have deep admiration for your attitude, @krishh, so please continue talking and sharing updates with this community – we're here, listening.

Thank you Kanaaz - to be clear, the metastasis is not IN the brain, but ON a bone. Some spreading into the brain can be seen on the MRI, but they are not calling it brain cancer. I've read the article you referenced above. Very technical but I did understand some of it. Prognosis does not sound too good, but then again that can be said for cholangiocarcinoma in general. My oncologist suggested we are probably seeing this rare metastasis because I am living longer than initially expected. At my diagnosis almost 3 years ago, they said I had maybe 2 years, so I'm beating the odds! Thanks again for the information. If you find anything else, please share. ~Kris

Hello Kris
I was diagnosed with cholangiocarsanoma in Feb of 17. I am being treated at CTRC I. San Antonio tx. They have sent me to Mayo clinic in Rochester Minnesota

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.

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.

@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'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.

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?