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Wanting to hear others stories on cholangiocarcinoma post tansplant
Transplants | Last Active: Nov 20, 2023 | Replies (5)Comment receiving replies
Thanks for getting back with me. My cancer was also secondary to PSC with my old liver. As far as their plan, they plan to monitor every couple months with PET and CT scans until they see something. They told me the recurrence rate is high if cancer is found outside the liver before transplant. The odd thing in this case is that they couldn’t see it on imaging or biopsy beforehand and that it has likely been there for a long time since the genetic makeup of the cells matched my original cancer from 2017. The hope is that the this growth is old and inactive, but they really like to emphasize how low that likelihood is to me. My oncology team is also at Mayo and is in direct communication with the transplant team
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@byaroch , Ms Rosemarya @rosemarya is a great consult. I was diagnosed feb 2017 de novo per hilar cholangiocarcinoma. I went thru chemoradiation brachey treatment and staging. They found in my old liver that the cancer had made perineural and vascular invasion. I had a auto acc. 13 mths. after the acc. that broke y neck and back. 1 yr later i was sched. to have more surgeries to help with paralyses. They found in my MRI and CT that i had lesions on my spinal cord and lungs. The oncologist , Dr Hiembach and Dr Rizvi . all told me that I would probably not make 5 yrs. Well here I am. When I started I told all the Dr's not to sugarcoat it. Let me deal with the emotions. I am sorry you are going thru this. Please look up the Cholangiocarcinoma Foundation. If you would like further conversation let me know. God Bless