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Dancer 41, please don’t feel there is no hope. Doctors only know what they are trained mixed with what they have seen. My HCC was cured by surgery. Perhaps he meant in his experience. where your case is at perhaps and I hate to site rare cases but I do know a few and there are some cases in our community that have had success with the chemo you have mentioned to both give relief to symptoms as well in rarer cases to actually kill the cancer and make a stage 4 patient eligible for surgery. Please remain hopeful and miracles do happen, just not often enough. I wish him my best, Patrick
Thanks for the helpful information! I will read through in detail but on a quick glance, I did see mention of radioembolization which has been discussed with us as a possible treatment. Originally, this was going to be the first line treatment but once the diagnosis was changed to cholangiocarcinoma they felt that chemo was the best place to start. His cancer is confined to the liver so we are hoping that radioemolization may give us additional options. The two things that we have working in our favor are that we live in a large metropolitan area so have access to large hospitals and specialists and we have good insurance. Thanks for reaching out sharing the information.
Hi Dancer41,
Welcome to our community although I am sorry you had to find us.
If you haven’t already done so, please look through the many patient and caregiver resources on the Cholangiocarcinoma Foundation website. It can be hard to find good information for a diagnosis as rare as this one.
From what you write, I have the impression your husband’s cancer is confined to the liver. If this is the case, please ask the doctors about whether he is a candidate or could be a candidate for other therapies that can be used. I put a citation below about liver-directed therapies. There are patients initially deemed inoperable who may even see their tumors shrink enough with chemo treatment to subsequently be eligible for surgery.
It is important to be treated at an institution with experience with this rare cancer, usually a major cancer center. And your husband’s case should be reviewed by a multidisciplinary team – rather than relying on an oncologist to tell your husband chemo is the only option. In the major cancer centers, cases are reviewed by teams that include oncologists, liver surgeons, radiologists and other specialties – the teams are called “tumor boards.”
Few of us see this diagnosis coming, and the initial days can be frightening as you absorb the news and figure out a treatment plan. In recent years, medical treatments for cholangiocarcinoma have expanded, so patients now have more options, including a number of promising treatments available through clinical trials.
Please send us your questions – there is a wealth of experience within this community here to help.
Here is the citation:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5411273/
Take care, regards, Mary
My husband (55yrs) was recently diagnosed. Like many of you, this was not a club I expected to join. He was in good health and had none of the risk factors but was experiencing some pain in his chest which is what started our journey. All of his blood work was normal but a biopsy confirmed he had cancer. He is not a candidate for surgery or transplant because he has multiple small tumors throughout his liver. Based on a lab report, he was originally diagnosed with heptocellulalr carcinoma (HCC) with 90% certainty but his scans didn’t match up to that diagnosis and after a second read of his slides at a different hospital was diagnosed with cholangiocarcinoma.
He just started chemo (gemcitabine/cysplatin) and we are both petrified about what lies ahead. He is having a very difficult time dealing with this diagnosis and prefers to know as little as possible. He has not asked the doctor about a prognosis although we were told there is no cure. I’ve done my own research and understand that the prognosis is very grim. We have two teenagers and it’s been very hard on them as well. They are old enough to understand but not mature enough to really handle this.
Not sure what I’m looking for here except to know that we aren’t alone. Any advice or hope that anyone can offer is appreciated.
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