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Anyone waiting for liver transplant and diagnosed with liver cancer?

Posted by parrot53 @parrot53, Nov 8, 2022

Good Day All,
I am wondering if anyone is in a similar situation. I have cirrhosis with good liver function. I was diagnosed with HCC and the tumor was treated with ablation. It has not recurred, at least not yet. It is my understanding that there is a 70% chance there will be more cancer due to a Cirrhotic liver. I am currently status 7 on the transplant list for a liver as I need to wait the required six months to gain MELD score exception points for the HCC. I feel very fortunate to have this time as this has been going on for the last three years now. However, I am worried about the cancer coming back and also unsure about a transplant if it does not come back. Just wondering if any of you are in or have been in a similar situation and have some encouragement. Thanks for listening.

Interested in more discussions like this? Go to the Liver Cancer Support Group.

rwilliams1152 | @rwilliams1152 | Dec 1 7:47pm
In reply to @rosemarya "@rwilliams1152, I will be thinking of you this week. I hope that all goes well." + (show)
@rosemarya

@rwilliams1152, I will be thinking of you this week. I hope that all goes well.

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Thank You Rosemary. That’s really nice of you. Rick

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rwilliams1152 | @rwilliams1152 | Dec 2 9:28am
In reply to @colleenyoung "Welcome, @rwilliams1152. Did you have the ablation? Are you also on the waitlist for a transplant?" + (show)
@colleenyoung

Welcome, @rwilliams1152. Did you have the ablation? Are you also on the waitlist for a transplant?

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Hello Coleen, abalation December 3rd. Then I assume I will get on the list after I wait six months. Still trying to figure out process. Rick

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 2 4:26pm
In reply to @rwilliams1152 "Hello Coleen, abalation December 3rd. Then I assume I will get on the list after I..." + (show)
@rwilliams1152

Hello Coleen, abalation December 3rd. Then I assume I will get on the list after I wait six months. Still trying to figure out process. Rick

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All the best tomorrow, @rwilliams1152. If you don't get answers to your questions about the process during the appointment tomorrow, do you have a transplant social worker you can contact?

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rwilliams1152 | @rwilliams1152 | Dec 2 5:15pm

Hi Coleen, I have not been given a transplant social worker yet. I was told by Kaiser I would be getting one after my doctor submits everything. Rick

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rwilliams1152 | @rwilliams1152 | Dec 6 7:37am

Social worker from Kaiser calling today to explain everything. Rick

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 6 9:01am
In reply to @rwilliams1152 "Social worker from Kaiser calling today to explain everything. Rick" + (show)
@rwilliams1152

Social worker from Kaiser calling today to explain everything. Rick

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@rwilliams1152 - Great to hear! This is a big step forward.
If you have not already done so, I encourage you to prepare a list of your own particular questions. And don't hesitate to ask the social worker to repeat or explain if you feel need for clarification.

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1 reply
rwilliams1152 | @rwilliams1152 | Dec 6 9:56am
In reply to @rosemarya "@rwilliams1152 - Great to hear! This is a big step forward. If you have not already..." + (show)
@rosemarya

@rwilliams1152 - Great to hear! This is a big step forward.
If you have not already done so, I encourage you to prepare a list of your own particular questions. And don't hesitate to ask the social worker to repeat or explain if you feel need for clarification.

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Thank you, will do. Rick

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vandi | @vandi | 1 day ago
In reply to @eparker6 "Hello parrot53, I too was in a similar situation-cirrhosis and cancer. Cancer was treated with ablation..." + (show)
@eparker6

Hello parrot53,
I too was in a similar situation-cirrhosis and cancer. Cancer was treated with ablation and TACE. Cancer did not recur. This was 1/2021. After all testing was completed, I too waited 6 months for the exception points. It can be scary to wait and see if the cancer will show up again, but the 6 months went quickly for me. Have faith!
I arrived in AZ January 2022. I waited 3 1/2 months and was transplanted 3/2022.
You can do it!! You are not alone. So many people have been through this and some with similar situations. There is a Mayo Liver Support group on Zoom that you could join. It helps to talk to people that are waiting for transplant and those that have already had their transplants. Your Mayo contact can probably give you the information. Stay strong!

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Hi! My brother is suffering from grade 4 Cirrhosis. I am lost & need help with reference of a good doctor for him & which is the best place to register for a transplant.
Lately he has been sleeping all day , has severe shoulder pain & I am really concerned. Will appreciate your help 🙏🏻

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