Benefits of getting a transplant.

Weigh out the options.. talk to people here. others will give you feedback.. yours is a unique situation but those tumors are not good.. my guy died from those.. within a year of discovery..

just some food for thought.

I had a transplant a little over 5 years back and am doing well. My docs said a new liver is good for at least 25 years if all goes well. I do know that some people have lived longer than 25 years with a transplant. I wouldn't bet on a 30% chance, those are bad odds.

It seems that the life expectancy has really increased over recent years with the onset of new immunosuppression drugs. It also seems that most people who have not made it 5 years did so because they either started drinking again or could not clear Hep C. With the new Hep C drugs this is even going to pave new life expetancy marks I bet.

Thank you David and SyXx. My doctor told he would not know the severity of my tumor unless a biopsy us done after the transplant. I have a 3 1/2 year-old and I hope to live long enough to see my daughter grow up and get married.

Worried daughter2, I was told by the cordinator that I have been placed on "status 7" status since I live out of state and when I move to Florida then my status becomes active. My understanding is that "status 7" is considered to be "inactive" per UNOS. At least that was what I was told. I was mistaken regarding my AFP, it actually was around 9 a month after my TACE treatment in June then was undetectable in September.

Mama Lama,

Thank you for your advice. My doctor told me my MELD score will remain at 25 as of today. I will have another MRI and blood test in December and if everything is the same I was told that I would get another 2 points. Giving the opportunity in early January '15, should I go ahead with the TP even if my Cancer does not come back? I am afraid that if I don't go though with TP and the Cancer returns aggressively, I could loose my opportunity. I asked other doctors and they told either decision I made is correct.

Worried daughter2, yes I do when I am higher in the list only because of work and family. Ideally, I would like to have the TP ASAP when I rrlocate there. I have heard that your can wait for months to get the right donor.

@ tomwinn - you asked if you should still have a transplant if the cancer does not come back? There is no way to know if it will come back or not. However, TACE and RFA are a "bridge" to transplant, they are not a cure. Unfortunately, the Hep C and Hep B virus cause liver cirrhosis which causes a greater risk for HCC. Have you discussed this with your transplant coordinator?

I agree with MamaLama - deciding will definitely be difficult.

I worried about this question overnight. This is a huge dilemma and we have explored one side of it here.

Folks have said they wished their loved one did not have to wait until they were at death's door to be first on the list to get a transplant. Especially when research says those who are the most well going into TP are the most likely to have positive long term outcomes. (lower MELDS, no cancer, no Hep C, good kidneys, etc)

BUT, say you have Hep C and HCC and a liver came available to you at MELD 17. You have time, BUT you know eventually you will be at death's door and will have to wait for the chance to get a matching liver...just a CHANCE.....a waiting game with a ticking bomb inside you/your loved one. Do you take the liver NOW or WAIT? Bird in the hand vs bird in the bush?

And since the surgery (all surgery) has risks...surgical survival rates over 95% at most TP centers are noted...since you are ALIVE today (or your loved one), do you risk the less than 5% chance that the you (your loved one) will not make it through while they still had time left?

Saying good night to Mike as he prepped for the surgery was so very hard...I might never have seen him alive, and I was not yet at the hospital. He had only weeks to live....but we would have had them together.

What a dilemma.

For us, there was no choice. I don't know what I would have done if there was an earlier option. My head tells me that with a terminal illness he would have had to take the chance. My heart isn't so sure of that.

We have this same dilemma again. Mike needs a heart valve. The surgery has risks especially since he is a TP and cancer survivor. Does he schedule the valve replacement as an elective surgery? Or wait until it is an emergency? The cardio says WAIT. Too high risk. Same for his incisional hernia. Surgeon says wait until or unless it becomes an emergency. His belly looks like a football is trying to escape, pointy end first. Ewww. And he says it hurts but it isn't a 911 pain. So he waits.

Risk management is individual between the doc and the patient. My favorite question..."If this were your wife or kid, what would you do?"

The decision about treatment is different. Even with horrible sides, getting rid of Hep C or controlling Hep B is too important. Folks should DO it, especially if they can get over the insurance hurdles. Sides or no sides.

Hugs,
Mama Lama, who had to sleep on this first....

@tomwinn - either resection or transplant give you a better chance of hopefully having no other HCC reoccurance. As you must of already been told - HCC can also come back in the new transplanted liver. That is why the transplant team has extremely close monitoring with frequent scans post transplant for a few years after transplant. They may need to scan you (post transplant) every 3 months with via CT scan or MRI - both with contrast. Again, it all depends what the protocol is at your transplant center.

You mentioned that due to the location of the tumor, your chief surgeon feels that it is too risky. Is this because the actual location of the tumor makes the transplant surgery a risky one OR is it because the tumor is/was in the inferior Vena Cava (IVC) and that might cause vascular invasion? I "think" once there is vascular invasion from HCC, you are no longer a transplant candidate - but this is something you need to discuss with your transplant coordinator and get confirmation/clarification from them.

Post Edited (Worried daughter2) : 10/22/2014 7:17:38 AM (GMT-6)

Tumors often recur... monitor often.. and transplant.. in my mind would be the best option..

just my opinion.. those tumors.. just seem to reappear.

Sandi

Thank you for all your opinions and advices. I think I am denial that the Cancer will not come back after my TACE treatment but after reading different posts and hearing it from here that the Cancer will return. I better take the better odd by having the TP. I just have to wait for another MRI and blood tests in December to see if there are any chances. Thank you again.