73 yr old F diag. Extrahepatic CC

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    I had two biopsies one at TGH and second one at Mayo Clinic. Only fist one came +ve. Liquid biopsy didn’t give much information in my case. Mayo had to use TGH report for UNOS Liver Transplant waiting list. Hope this helps. Prayers for yours mother health?.



    Hi KC,

    Thank you for posting your mom’s story.  I am sorry to learn that securing enough biopsy material for testing has been so frustrating.  As I had mentioned in a note to you, liquid (blood) biopsy testing technology is expanding by leaps and bounds, so it may be helpful to ask your mother’s doctors if a liquid biopsy could be used to identify biomarkers in her case.

    The MSI-high biomarker is not very common for cholangiocarcinoma but we have seen a few patients with it who have done well in treatment.  Other, more commonly seen biomarkers (or genomic defects) for our cancer have targeted treatments available or in testing, which can be accessed through clinical trials or, in some cases, through expanded access programs.

    Apologies for the software glitch that delayed for a few days your posting turning up on the board.  (Readers, if you write a post that seems to disappear when you hit submit, please send me a note and we will look for it.  I don’t think this happens often, but we don’t want to miss any postings.  Some types of links or attachments seem to send messages into limbo.)

    The medical journals are sometimes not user friendly for patients and caregivers.  There is much good information written in everyday English available on the Cholangiocarcinoma Foundation website; please take a look if you have not yet consulted our website.

    I hope your mother’s treatment goes smoothly and brings good results.  This cancer can be tough for both patients and their caregivers. Your mother is so fortunate to have you helping with research and doctor visits as she navigates this unexpected diagnosis.

    Take care, regards, Mary


    Hello everyone,

    I would like to introduce myself. My name is KC. My mother was diagnosed with Extrahepatic CC, Stage III. When this happened, I buried myself in medical journals / treatments and burned myself out doing research. I have been visiting here on and off for a while now. I just recently decided to become part of your wonderful community after a very difficult decision I made recently. Of course, all decisions are made by the patient. But as a caregiver, your opinions carry so much weight that the decision is indirectly yours. I’m grateful for finding this site and the wealth of information here is priceless. So much easier to read over doctor jargon.

    I tried to get my mother in the TOPAZ-1 clinical trial. However, after 2 attempts, the doctor was not able to collect a biopsy sample via FNA (Fine Needle Aspiration). The option the doctor gave us was that if the surgeon was going to attempt another biopsy, he might have to punch a hole through the bile duct in order to get to the mass. If we were to take that option, treatment would be delayed again for at least another 3 weeks, there may be a complication with the damage to the duct, and ultimately might not even succeed. Since it has already been 12 weeks since Kaiser discovered her cancer, I did not want to delay any treatment any longer and give the tumor the time to grow and metastasize. The second opinion I got from the City of Hope doctor supported Kaiser standard treatment of Gem/Cis ASAP. He also mentioned that just because the FNA failed, doesn’t mean that she cannot attempt another biopsy later on. But without a biopsy to determine is MSI is present, there is no way to for her to be prescribed Pembrolizumab (Keytruda). Participation in the clinical trial would also not allow my mom to receive radiation therapy on the side. So, in front of the doc, I gave my mom all the facts, and recommended she just start Gem/Cis that day. Tomorrow will be her 2nd treatment, 1st cycle. But, weighing the decision of attempting a 3rd biopsy vs. starting Gem/Cis now, still feels heavy on my mind. I’m not sure if I made the right recommendation.

    I looked up a full body 3D anatomy model and 3D pancreatic model so I understand how difficult it is to get to the tumor location. Has anyone else experienced difficulty with attaining a biopsy? Is a biopsy taken after chemo treatments still viable for molecular testing? Living in the US, can we seek surgical treatment in Toronto, Canada? Since Kaiser would not cover Proton Therapy, we’ll pay out of pocket for Proton Therapy since California Protons offer a reduction in pricing for people who are denied by their insurance company. These are the questions I’m currently looking into.

    I think sharing is therapy for the caregiver. I feel better after writing this. Much love everyone.

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