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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 15 10:34am
In reply to @rockofhudson "Im in the same boat. Waited 2 1/2 years for the tumor to grow to 2CM..." + (show)
@rockofhudson

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?

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Hi @rockofhudson (love the username by the way), Sometimes retirement has different plans. Have you had a liver biopsy done before? Any questions before for your upcoming appointment?

REPLY
rockofhudson | @rockofhudson | Jul 28 6:27am

Hi Colleen,
Yes I've had several years ago.
Now they are doing quarterly MRI's since the discovery of the tumor 2 1/2 years ago.
They biopsied that to confirm it was cancerous but no other liver biopsies have been done for years.
Thanks
Larry

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 4 10:52am
In reply to @rockofhudson "Hi Colleen, Yes I've had several years ago. Now they are doing quarterly MRI's since the..." + (show)
@rockofhudson

Hi Colleen,
Yes I've had several years ago.
Now they are doing quarterly MRI's since the discovery of the tumor 2 1/2 years ago.
They biopsied that to confirm it was cancerous but no other liver biopsies have been done for years.
Thanks
Larry

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@rockofhudson, any update? How are you doing?

REPLY
In The Now | @phillydawg | Nov 18 2:34pm
In reply to @rosemarya "@phillydawg, It's good to hear that treatment has gained you some exception points and that things..." + (show)
@rosemarya

@phillydawg, It's good to hear that treatment has gained you some exception points and that things are looking hopeful for you getting your liver transplant! I guess that you know that the waiting time is anyone's guess and that it could happen sooner - or - later that the doctor suggested time.
I found a discussion that I want to be sure that you see because it contains some very helpful information from other members about how they prepared in advance for the transplant. Your comments, questions, and your own helpful tips are always welcome:
- Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
Phillydawg, Where will you go for your transplant? Does it involve travel and lodging?

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University of Pennsylvania. 30 minute travel

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alh4 | @alh4 | Nov 19 9:50am

Good morning!
I had a liver transplant in 2020. I too had liver cancer. They observed the tumor for a few months and it continued to grow I had 2 chemo embolizations. MRI results was difficult to determine if it got it all so we moved forward with transplant. My oldest daughter gave me part of her liver.
Now, my brother is going through the same thing. He received the Y90 radiation and is being evaluated for a liver transplant.
Wishing you the very best care

REPLY
rwilliams1152 | @rwilliams1152 | Nov 21 4:03pm

I am in the same situation. Getting an ablation in a week or two. And then the 6 months wait. I’m sure if the cancer comes back they will do another ablation. Hang in there you will be fine. Prayers to you. Rick

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1 reply
margui70 | @margui70 | Nov 22 9:30am

I hope you hav you liver transplant and are doing well. My husband is waiting the the six months period to get the MELD exeptions points. His case is similar as yours. Sending you my best wishes !

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 29 3:35pm
In reply to @rwilliams1152 "I am in the same situation. Getting an ablation in a week or two. And then..." + (show)
@rwilliams1152

I am in the same situation. Getting an ablation in a week or two. And then the 6 months wait. I’m sure if the cancer comes back they will do another ablation. Hang in there you will be fine. Prayers to you. Rick

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

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1 reply
rwilliams1152 | @rwilliams1152 | Nov 29 7:34pm

I am having my ablation on December 3rd. I am waiting for my Doctor to turn in all paperwork for a transplant. I understand it will take six months to get on the list. Rick

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Dec 1 2:09pm
In reply to @rwilliams1152 "I am having my ablation on December 3rd. I am waiting for my Doctor to turn..." + (show)
@rwilliams1152

I am having my ablation on December 3rd. I am waiting for my Doctor to turn in all paperwork for a transplant. I understand it will take six months to get on the list. Rick

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

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