December 3, 2020 at 4:23 pm #100683bglassModerator
Welcome to our community. I am glad to hear that you are finding helpful information here, and I hope you were also able to check out the Cholangiocarcinoma Foundation website which has many resources for patients and caregivers.
I can sympathize with your father-in-law puzzling over the disconnect between feeling well now and being told he has a serious illness requiring significant treatment. For many, this cancer is symptomless in its early stages, so the diagnosis blindsides you, and it takes a while to sink in. But starting treatment early when there are not many symptoms and problems can help stabilize the cancer and slow it down so there are many more good days to come. It is fortunate several major cancer hospitals are nearby.
It is positive news your father-in-law may be a candidate for surgery. It is important to get a solid surgical opinion from some specialized in complex liver surgeries.
Your father-in-law feels lucky, I am sure, to have you looking out for him. Please stay in touch and send any questions our way.
Regards, MaryDecember 2, 2020 at 7:16 am #100678RichardwParticipant
I had the same thing local doctors telling me I wasn’t a eligible for a liver transplant and wanting to give me a needle biopsy. I got a third opinion at Sloan Kettering which told me otherwise. I had 8 brushings and 2 forcep biopsy not one came back conclusive. Luckily my doctors at Sloan knew not to do a needle biopsy, I never did get a conclusive diagnosis.December 1, 2020 at 10:22 pm #100673DaniellerxParticipant
My father in law was “tentatively” diagnosed with Klatskin tumor in early November 2020. Unfortunately the ERCP only showed atypical cells and not cancer cells, so the local docs have held off on labeling it, even though they have no doubt what it is based on all the other findings/imaging studies. Luckily we live only about 35 miles outside of Boston so we are now consulting with Dana Farber Cancer Institute and their colleagues at Brigham and Women’s. So hopefully I will be able to provide some updates soon.
He is 79 years old and relatively active, lives alone and goes out to do something/run errands every day. He started feeling sluggish about 6-8 months ago, enough to make an appointment with his PCP. Elevated LFTs, bilirubin, etc got him a referral to a gastroenterologist who ordered imaging studies. After the MRI, CT scan and ultrasound, they performed an ERCP and stented the right hepatic duct. Evidently he has the type that originates in the bile duct but has sort of diffused out into the tissue to form a mass around the area in the liver. The good news is that it appears to be very localized, and based on imaging there is hope that no spread to lymph nodes or major vessels has occurred. Only one setback so far, where the original stent migrated 2 days after placement and caused a blood infection that landed him in the hospital for 5 days. The new stent is working so far, his labs look much better and he feels great.
And this is part of the problem. He feels so good that he is doubting the necessity of treatment, and in fact is having a very hard time reconciling that he could have something like cancer when he feels better than he has in a year. He is an intelligent man and will come around, but I can only imagine how difficult this is for him to process.
I would say the biggest lesson in his story so far is that the local doctors were in over their heads and didn’t know it. They were single-mindedly after definitive tissue samples and pushed for needle biopsies and removal of the gallbladder (which is otherwise healthy despite some gallstones that have caused no symptoms). I have been researching this like its my second job for the past month and got him the consult with Dana Farber before we allowed anyone to schedule a surgical intervention. The local GI doc told him he is not a transplant candidate due to age and not a candidate for resection based on the location. Dana Farber believes it may be resectable, and if it is, a needle biopsy at our local hospital could have made things much worse. The message here is, please get to a major medical center and get a second or even third opinion. This is a rare and aggressive cancer, and even though those words are scary, they really mean this: rare = get to the people for whom this is not rare- the big medical centers that have seen this many times, and aggressive = time is a factor so do it now, not later.
I may only be the daughter in law, but he is very precious to me. I keep working to understand what we are dealing with so I can be proactive and not reactive to the information which seems to change with every appointment. This foundation is a wealth of knowledge and I appreciate the community you have provided in these forums. God bless each of you on this journey and thank you for sharing your stories.
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