1. < Transplants

Wanting to hear others stories on cholangiocarcinoma post tansplant

Posted by byaroch @byaroch, Nov 16, 2023

Hey everyone, I recently went through a deceased donor liver transplant with a Whipple procedure in Rochester about 5 months ago. I’m a 28 year old optometrist and this process started for me when I turned 21 and was diagnosed with cholangiocarcinoma. I had surgery back then to remove the tumor and remained cancer free up until this past year when Rochester found an early cancer starting in my liver again. I’m an extremely unique case, as I got through chemo and radiation as well as my pre op biopsies, scans, and even the staging surgery without detecting any cancer outside my liver. During my transplant, they found a small plaque of cells on the outside of my vena cava that they believe is from my original cancer in 2017, not the more recent one. They removed all they could, but some cells were too deep to remove and were left behind. I’ve been put on everolimus due to its anti-tumor properties, and have had some inflammatory tissue pop up around that area that the team took first as post op inflammation. The tissue got slightly bigger at my 4 month post op, and the team was suddenly scared of recurrence. They told me we should get biopsies to be sure, which I did a few weeks later and those results showed no evidence of cancer. Just chronic inflammation. I was feeling a lot better mentally (physically I’ve been doing great this whole time, back to biking and rock climbing and work), but my oncologist really kills my Hope when she says things like “they might have just missed the tissue in the biopsy” or “I expect this is probably going to recur at some point.” They tell me not to loose hope that tissue is old growth that wasn’t very active and won’t suddenly activate, but they sure focus on the negative every time I talk with my team. Just wanted to put my story out there and see if there’s anyone else that’s had anything remotely similar

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 17, 2023

@byaroch, I'm glad that you have joined Connect, and I want to welcome you to the transplant community. It must be a relief for you to know that your newly transplanted liver is heathy and that you are able to return to the activates and career that you enjoy. I have not had experience with cholangiocarcinoma, although I was inactivated from the liver transplant listing temporarily in 2009 while waiting to get a clean diagnosis before being reactivated. I needed my transplant as a result of PSC and was sent to Mayo Rochester where I received my transplant in April 2009. You are in a good place, the best place, for your current care!

Is your oncologist at Mayo? And is he/she in communication with your liver transplant experts? I don't know why he/she has used words that feel so negative to you. My experience with Mayo has always been one of th hope and reality. Unfortunately cancer is one of those conditions that doesn't always follow the expected rules.

I would like to share the following link to a conversation between members about cholangiocarcinoma. I think this is mostly about pre-transplant experiences, but I think you will find that you are among friends who will hopefully know more than I do:

- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?
https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

I want to invite s the following members to join this conversation - @krissycanada @jerrydrennan @edie78t, @juliapoland, @stanr71

@byaroch, What kind of monitoring will you be scheduled for you? What has the liver transplant team had to say about this as related to their experiences with similar patient episodes?

REPLY
1 reply
byaroch | @byaroch | Nov 17, 2023
In reply to @rosemarya "@byaroch, I'm glad that you have joined Connect, and I want to welcome you to the..." + (show)
@rosemarya

@byaroch, I'm glad that you have joined Connect, and I want to welcome you to the transplant community. It must be a relief for you to know that your newly transplanted liver is heathy and that you are able to return to the activates and career that you enjoy. I have not had experience with cholangiocarcinoma, although I was inactivated from the liver transplant listing temporarily in 2009 while waiting to get a clean diagnosis before being reactivated. I needed my transplant as a result of PSC and was sent to Mayo Rochester where I received my transplant in April 2009. You are in a good place, the best place, for your current care!

Is your oncologist at Mayo? And is he/she in communication with your liver transplant experts? I don't know why he/she has used words that feel so negative to you. My experience with Mayo has always been one of th hope and reality. Unfortunately cancer is one of those conditions that doesn't always follow the expected rules.

I would like to share the following link to a conversation between members about cholangiocarcinoma. I think this is mostly about pre-transplant experiences, but I think you will find that you are among friends who will hopefully know more than I do:

- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?
https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

I want to invite s the following members to join this conversation - @krissycanada @jerrydrennan @edie78t, @juliapoland, @stanr71

@byaroch, What kind of monitoring will you be scheduled for you? What has the liver transplant team had to say about this as related to their experiences with similar patient episodes?

Jump to this post

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

REPLY
1 reply
jerrydrennan | @jerrydrennan | Nov 17, 2023
In reply to @byaroch "Thanks for getting back with me. My cancer was also secondary to PSC with my old..." + (show)
@byaroch

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

Jump to this post

@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

REPLY
1 reply
byaroch | @byaroch | Nov 17, 2023
In reply to @jerrydrennan "@byaroch , Ms Rosemarya @rosemarya is a great consult. I was diagnosed feb 2017 de novo..." + (show)
@jerrydrennan

@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

Jump to this post

I’d be happy to talk more, thanks a lot for the input!

REPLY
mdplastics | @mdplastics | Nov 20, 2023

I was diagnosed with intrahepatic cholangiocarcinoma 5 years ago. Had surgery, chemotherapy, radiation, recurrence, Y-90 radiation procedure and more chemotherapy. Received a transplant 2 years ago and have been doing very well with no issues whatsoever. Get surveillance imaging every 6 months and 4 to 6 weeks blood tests.

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