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.

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parrot53 | @parrot53 | Jul 8, 2024

Thank you for sharing. I am hoping your biopsy goes well. Yes, just to be here at our age makes us fortunate although you are younger than me. I am with you on the Beta blocker fatigue.
That projected MELD score will definitely put you on that transplant list. I am confident you will do well when you get your transplant.
I am fortunate enough to avoid one for now anyway.
Best of luck to you.

rockofhudson | @rockofhudson | Jul 7, 2024

Im in the same boat. Waited 2 1/2 years for the tumor to grow to 2CM and had the ablation done back on May 9th, first follow up MRI looks good although they now see some abnormality in my Pancreas. Going in for a biopsy on the 19th of this month. Oncologist said it could be nothing and a possible result of the Portal Hypertension.
Im still working full time despite some common Cirrhosis related issues and the beta blocker fatigue. I want to stay in denial about it all and just continue on as normal. This past year has been a real slap in the face. I was thinking id coast into retirement and see how things go and if necessary get my TX at some point closer to 70 or not at all. Im 63M now. I think we are both fortunate as others have said, that we have some time to plan and accept. My current meld is 13, im told at the end of the 6 months that goes up to approximately 28-30 if nothing changes.
As an old friend told me we are in the bonus round. Ive lived with this hanging over my head since i was 26 when i first discovered i had HEP-C. Lots of living has been done in the past 37 years. My hope is ill do well with the transplant and feel fortunate that i have that option. Not the retirement gift i was thinking about but it truly is a gift right?

melborn09 | @melborn09 | Jul 6, 2024

My husband has been diagnosed with hepatocellular cancer. What are our treatment options?

In The Now | @phillydawg | Jul 5, 2024

I am in the same situation. Had y90 TARE treatment that killed the 3.5 cm single tumor. Just received exception points. All blood work is good. Doctor said I could get call within 8 to 16 months.

lindsay208 | @lindsay208 | Apr 16, 2023

In reply to @mbentley "I believe you will hit the jackpot at Mayo. We believe we have." + (show)

Im glad for you. This has been a rough 18 months with back surgery that failed to cancer diagnosis followed by medical retirement from a career he loved. He deserves the best and I hope Mayo is it because so far civilian and VA doctors have not helped. His civilian doctor got mad when I asked questions and when I wanted to know why certain things were being done. We will be there next week for testing, hoping for good things to hapoen.

mbentley | @mbentley | Apr 16, 2023

In reply to @lindsay208 "Thank you for for words of encouragement. Life has been an emotional journey since diagnosis til..." + (show)

I believe you will hit the jackpot at Mayo. We believe we have.

lindsay208 | @lindsay208 | Apr 8, 2023

In reply to @mbentley "Great news. Once he starts the test it will be like super fast paced and very..." + (show)

Thank you for for words of encouragement. Life has been an emotional journey since diagnosis til now. I’m praying Mayo Clinic will be the answer.

mbentley | @mbentley | Apr 8, 2023

Great news. Once he starts the test it will be like super fast paced and very thorough. Everything from mindset, mental, and physical condition. I mean everything. Is checked and checked again.
I had more test added before approval. Good luck and mostly God bless you and your family.

lindsay208 | @lindsay208 | Apr 7, 2023

In reply to @mbentley "Mayo JAX will not do the Y90 map and ablation unless you are already on the..." + (show)

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,

mbentley | @mbentley | Mar 26, 2023

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?