Anyone waiting for liver transplant and diagnosed with liver cancer?

this was my situation on 2020 the cancer show out and also doctors treat the cancer with ablation then because my old liver has not more tumors and the tumor mesure not exceed in the permit level then they refer me to Mayo Clinic in Arizona and I wait just 2 month and they transplanted a new one. A doctor told me when the cancer shows out my waiting list was shortened because this situation required transplant immediately so you have to be grateful because you will have your transplant soon. I had the same situation as you describe above

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!

Thank you for listening. It is comforting to know others are going through the same thing. I am so glad to know you are doing well and I am so grateful for your encouragement. I wish you all the very best. We are so lucky to have such wonderful care teams and to live in an age where these miracles can take place.

@parrot53, in addition to the helpful responses you've already received, I think @karmamamma @contentandwell @kathycaudle may have experiences to add.

Parrot, are you receiving cancer treatments at the moment for hepatocellular carcinoma (HCC)?

Not currently. I had microwave ablation in August 22. Currently on transplant waiting list inactive to accrue exception points for MELD score due to HCC.

Hi there. I developed liver cancer and had it ablated as well. They moved me to the top of the transplant list and said they would recheck in 6 months and if it had returned, I would never get the transplant. But in month 5, I was offered a liver and was transplanted. They examined my old liver and found that the cancer had returned but bcuz it was a month shy of being rechecked, I luckily was transplanted! I pray you get your liver!

Yes NASH and 2cm HCC. With a couple unknown cyst.
Finished evaluation Jacksonville Mayo. 3/10/23
I’m very much the same as you. I don’t know what I’m going to do or be listed yet. Hope no know soon.

I appreciate all of you sharing your stories on this site. My husband was diagnosed with HCC in October and had the y90 procedure In November.His AFP score dropped about 40 points right after the procedure and is back up to 200. His Dr says that there is only “residual debris” where the tumor was and yet he can’t explain why the AFP is still elevated and he is dragging his feet. He also has cirrhosis which doesn’t help. There was only one tumor and so far it hasn’t spread. The VA has recommended a transplant, so we are moving forward since the civilian dr isn’t working out. Has anyone else experienced a high AFP following ablation and it was attributed to something other than cancer?

Mayo JAX will not do the Y90 map and ablation unless you are already on the transplant list with cirrhosis.
As soon as I was listed they scheduled the procedure.
Does your husband have GEHA insurance?

No, but the VA will cover him but now they are dragging their feet. I contacted Mayo and he goes in for testing this month. Mayo is the best, he has great insurance so we are going to try Plan C while I work on Plan D,