Posting for a friend whose account is not yet approved so she can’t post.
I'm sorry we are meeting this way but so grateful that this site and discussion board exist. Like you or a loved one, my mom was diagnosed with chlolangiocarcinoma - sporadic hilar chlolangiocarcinoma. I want to share the details of what is known and would appreciate any information, feedback, experiences any is willing to share, especially as it relates to course of action, etc.
My mom, 65, was diagnosed last week. Based upon her MRI, ERCP, and CT angiogram, she has a mass in her bile duct, the right side of her liver has begun to shrink and the left side has started to grow. The ERCP brushing did not show cancer cells. There are signs that the tumor looks to be close to the portal vein and it might be touching it but there should be minimal involvement. Her CT came back clear so all signs show this has not spread further. Fantastic news!
We've met 4 surgeons in Manhattan in less than 1 week. All have given the same information to us. They can do a resection (YES!!) with hopes of it being a cure and there is still a small possibility this might not be cancer but we won’t know until after surgery. From reading up, I now know how fortunate and amazing my mom’s situation is for CC. We are SO grateful.
The surgical plan is to remove the tumor in the bile duct, reattach the bile duct to the small intestine, remove the right side of the liver and 15-20% of the left, remove the gallbladder, and remove lymph nodes.
The current plan is to move forward with a resection within 2 weeks. My mom chose Dr. William Jarnagin at Memorial Sloan Kettering.
I would love opinions on whether we seem to be on the proper path, opinions on MSKCC or just any thoughts in general. We are open to honesty and a change of plan if necessary.
Thank you all so much. Remaining positive and hopeful