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jerrydrennan
@jerrydrennan

Posts: 45
Joined: Mar 23, 2018

staging for liver transplant

Posted by @jerrydrennan, Sat, Mar 24 11:39am

I am listed for a liver transplant due to cancer. I am getting set up for staging on my next visit. what all is involved with staging.

REPLY

@jerrydrennan, I see that this is your first post, and I would like to welcome you to Mayo Connect. We are happy that you have joined us. I am a liver/kidney recipient, and I have no first hand knowledge related to your question. I do believe that some of our members who have had experience, will share their thoughts about what you can expect on your next visit.

Here is a link to Mayo Clinic's Patient information about liver cancer. It includes information about tests and procedures, as well as determining extent of cancer and staging. .
https://www.mayoclinic.org/diseases-conditions/liver-cancer/symptoms-causes/syc-20353659

Let me know if this information is what you are looking for.
How soon will you be going for your appointment?
Rosemary

Thank you for touching base with me. I am scheduled may14 to go to Mayo for test and possibly staging. I am diagnosed with cholangiocarsanoma I know I spelled that wrong. I just found this site. It's very informative. I have not found any one to talk to with this problem. So I'm steering this blind. Just not sure what to expect.

@jerrydrennan

Thank you for touching base with me. I am scheduled may14 to go to Mayo for test and possibly staging. I am diagnosed with cholangiocarsanoma I know I spelled that wrong. I just found this site. It's very informative. I have not found any one to talk to with this problem. So I'm steering this blind. Just not sure what to expect.

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@jerrydrennan,
Unfortunately, I learned how to spell cholangiocarcinoma 9 years ago. I was listed at another transplant center (University of Kentucky Med Center) with Primary Sclerosing Cholangitis. When they suspected cholangiocarcinoma they scheduled an ERCP to collect tissue samples. But they were unsuccessful, and I had to be inactivated from the list. The head transplant Doc made arrangements for me to go to Mayo Clinic. He said it is the world leader in cholangiocarcinoma research and treatment. In my case, I did not have it, and was relisted at Mayo where I received my transplant.

I can relate to your "steering blind" comment. Keep in mind that you will be in the very best place and in capable hands.
I am here to talk with you. I joined Mayo Connect because I was looking for someone who shared my experiences. So I can honestly say that I know what you mean.
Are you already listed for a liver transplant? And are you listed at Mayo or somewhere else? Which Mayo location?
Rosemary

@jerrydrennan

Thank you for touching base with me. I am scheduled may14 to go to Mayo for test and possibly staging. I am diagnosed with cholangiocarsanoma I know I spelled that wrong. I just found this site. It's very informative. I have not found any one to talk to with this problem. So I'm steering this blind. Just not sure what to expect.

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I am listed at Mayo clinic in Rochester Minnesota
I have a meld score of 29
I know I am at the right place. I am from Kosciusko TX. I was sent to CTRC in San Antonio tx. We thought was the top cancer therapy research center next to MD Anderson on Houston.
They sent me to the Mayo. I have talked to some liver Transplant patients . They all have a different reasons than mine. I have found odd. I did find one person in the year I have been involved with the Mayo. David had a similar cancer but had other issues the attributed to the cancer and transplant. I checked that site it did not reflect staging. Just praying for activation after staging. Thank you for responding, I see how this will be helpful. I really did not expect a response.

Resized_IMG-2681

@jerrydrennan I found these. Take a look. they might give you some information.

https://www.mayoclinic.org/diseases-conditions/cholangiocarcinoma/symptoms-causes/syc-20352408

https://connect.mayoclinic.org/webinar/what-patients-need-to-know-about-hilar-cholangiocarcinoma-and-liver-transplant/

One of our moderators might have some information to add after the weekend.
Sending you prayers
Rosemary

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@jerrydrennan

Thank you for touching base with me. I am scheduled may14 to go to Mayo for test and possibly staging. I am diagnosed with cholangiocarsanoma I know I spelled that wrong. I just found this site. It's very informative. I have not found any one to talk to with this problem. So I'm steering this blind. Just not sure what to expect.

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@jerrydrennan I hope all goes well on May 14. I had a liver transplant due to non-alcoholic cirrhosis. I did have some malignant lesions in my liver also but they were burned off by an ablation.
If they have you set up for "staging" (I'm not sure exactly what that means or entails) then it sounds like you are already heading in the best direction.
JK

@jerrydrennan, Welcome to Mayo Clinic Connect! I am one of the moderators, and I work in the clinical area with the physicians and nurses. I spoke to our surgical director this morning about your question. Staging is an operation to explore your abdomen. The surgery is done either as a regular open surgery or as a laparoscopic surgery (small incisions). The purpose of the surgery is to rule out progression or spreading of the tumor, as sometimes that can't be seen clearly enough on imaging. The doctors will definitely explain this further to you at your appointment, and you are welcome to bring a list of questions for them as well. They are always willing to take the time to answer your questions before you undergo any surgery.
I hope this helps a little bit. All my best to you for your appointments in May.

Yes thank you very much.

Jerry, you may also wish to connect with @krishh and others talking about cholangiocarcinoma in this discussion:
* Cholangiocarcinoma – Bile Duct Cancer – anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

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