Treating Liver Cancer...hoping for transplant after ablation

Hi guys,
i would love to hear your ideas and/or experiences about this:
i had my 2nd ablation on June 18.
i just had my first post op MRI, and it was really good!! By good, I mean there are not any recurrences in either ablations sites. This a first!:) There were no new lesions seen. There was something around both sites that looked dark/shadowy on MRI, but I was told it could very well be irritation.
I did my evaluation to list last year, and they refused me due to stress and they did not like my care giver. They recommended a shrink, which I arranged immediately to learn how to manage stress. I was told recently by my hep that my shrink and I have done a good job.
Then he told me I have to wait another 3 months for another MRI to make sure my cancer is not back before I can be listed. He said it would/could return immediately in a new liver. Well, I have NEVER heard that before, or been told that before. Certainly heard it about Hep C but not cancer. If they expected patients to not have or show any cancer while being on the list, or waiting to be listed, many more would never be transplanted. I have had 2 RFA's, to bring me back into Milan. They said that a ChemoEmbo will be next. One can not live with liver cancer unless they are TP'd. I know it, they know it...so what do you think is up? Clearly I am not understanding something? i am not shy, he and I talked for a long time, and I questioned this over and over. My concern like many, is I will become too sick while waiting and things could progress to the point I can not be listed ever. Yes, I know it is all a risk and there are no guarantees.
Please ask me any questions you may need to clarify what I am saying, and please tell me your thoughts and experiences with cancer and a similar situation.
Thank you all very much,
Hugs and Love,
Zo

ZO: I've renamed your post to make it easier for our members to find you and offer their support.

Post Edited By Moderator (MamaLama) : 8/26/2014 6:42:16 PM (GMT-6)

Great to hear that your latest MRI looks clean! Let's hope your next one goes as smoothly and things can start to settle down from an immediate metastasis standpoint. Is it HCC that they're concerned about?

I've been dealing with a similar issue myself wrt cancer/listing catch-22 limitations, just a different type. They suspect I have a large peripheral, intrahepatic, mass-forming cholangiocarcinoma but they haven't been able to confirm this with multiple biopsies. And as long as the suspicion remains, listing is not an option. Even if they do a resection, I will have to wait for an unspecified amount of time to confirm that there is no recurrence (but this almost always happens with cholangiocarcinoma, the nasty stuff just keeps coming back and back ...). In addition, if they do the resection which also reduces my hepatic reserve (they need to include a margin around the tumor), the chronic PSC disease I have that started this whole mess still remains and will continue to weaken the remaining portions of my liver.

We thought that we got lucky with the tumor remaining stable on it's own which indicates that it may not be ICC after all. But the latest tumor marker tests have suddenly shot up higher, not cool. So I'll meet with my surgeon and hep shortly to discuss the options yet again.

Yes, throwing cancer in this mix can definitely complicate things a lot!

Zo -

My bad, PSC stands for: primary sclerosing cholangitis. Basically my auto-antibodies have decided to wage war on my bile ducts and my bile ducts lost! Obviously not a very healthy thing for your liver and I too have advanced, decompensated cirrhosis with PHT/ascites/edema/GI bleeding, etc. It's the chronic scarring and inflammation of the bile ducts that makes us PSC'er more prone to CC (cholangiocarcinoma) than HCC, as in most other liver diseases. And the recurrence rate of ICC (intrahepatic cholangiocarcinoma) is so high that they stopped doing liver transplants because the resulting death rates were so high. Only a very narrow, specific form of ICC is even considered for LT anymore - for the major/rest of us, it's an automatic boot off of the list until things are resolved.

The main problem of LT with possible cancer lingering around (after treatments like in your own case) is that the rejection therapy also inhibits your body's ability in fighting off any residual cancer cells in the rest of your body. The new cancer then has free reign in your system and can very quickly and aggressively explode. Not a fun scenario. And also, as in your case, residual Hep-C can similarly take-off as well which your doctors have mentioned.

I'm in the mid-west region, Detroit and nearby vicinities. The tumor was actually spotted via MRI since the clinical symptoms tend to mirror those of PSC itself and only CA19-9 can be used as a very poor tumor marker. It's the combination of PSC with CC that drives the doctors (and us patients as well) crazy since it's hard to know what doing all the damage: the PSC or a possible CC??

Btw, in your beginning note: "There was something around both sites that looked dark/shadowy on MRI, but I was told it could very well be irritation. ". I see a lot of this type of thing in my MRI imaging as well. The inflammation/edema within my liver's expanded portal tracts (due to my benign PSC) can be seen in the non-contrast imaging: mildly darker in T1-weighted, mildly enhanced in T2-weighted. So your ablation may very well have caused your own liver to react to the insults in a way that led to something like this diffuse, shadowly inflammation/edema near the treatment site(s).

Hi Worried,

Thanks so much for your info. Yes, am aware of the mets.
I have always considered myself rather pwell informed on this stuff. My husband died of this 5 yrs ago, and I learned then, more than I ever wanted or needed to know, and the same last yr when I was diagnosed. It blows my mind I somehow missed this tidbit, esp with it being life altering. Just goes to show I am not as darn smart as I thought! Lol!
I worry abt the vascular involvement too. My last path (last year) was moderately differiented, no vascular invasion, and the dyes used did not show a propensity for mets. The good MRI did not see the one lesion that was in between two vessels. Do you think something they saw, or suspect, raised their concerns?
Anyone else? please tell me what you know about this aspect.

I am watching your posts, Zoarie. It stinks you have now got through the issues with stress for tp listing, now this 3 month wait. I only wish I had some input that you have not stumbled upon in your long journey, but I don't. My first thought was to find a new Hepa...but that really was a knee-jerk reaction : )

Watching you... and thinking only positive thoughts. Big Hugs

The Miz,
Thank you so much for your note and for "getting it". A lot of goodness coming to both of you.
Keep up the good work!
Zoarie

Worried Daughter,
Please refer to my original post for the details.
No, I have never had a resection. That is not viable as both lobes are involved and I only have a very small part of a functioning liver.
The path report came from my second ablation June 2014.
The doctors were not concerned about the moderately diff, but I have always been. I used to be a RN in urology, and when path reports cane back mod. diff. it was a big deal, or at least note worthy. I know each ca is different. I would have never known if I had not got copies of my records and read it.
Since my original post about all this, I was told my cancer stage is T-111, no longer T-11. I don't know yet if it is 3 a or 3 b. i was NEVER told that it had changed. That is why the difference in listing v/s not. My doc said, very diplomatically, that the stage ca was discussed.
I absolutely know it was not. It is certainly something I would have remembered, as it is life altering. My not knowing the new stage was why i was caught off guard when my dr called to discuss the MRI that i thought was so great, and started talking about the ca returning in a new liver.
This dr. is great, very good at what he and the entire team does.
Ziff knows :~) I asked him point blank if he thought if I would be transplanted, and he paused and said, well, I am worried about 2 tumors you have. I asked him if I became sick would he transplant me then? The answer is no. That totally freaks me out.
But at least I do now understand why the ca can come back in the new liver, with the new stage.
Thanks to all,
Zoarie

Worried Daughter,

Yes, you are correct that moderately differentiated tumors are generally more well behaved that poorly differentiated ones which can grow very rapidly and like to spread among organs. But this is only part of the equation and all the other things need to be factored in of course. I'm more familiar with ICC than HCC but from what I understand, HCC tends to not spread as readily as ICC ... a good thing in Zoarie's case!

I'll have to brush up on my knowledge of the HCC details myself. You never know when you're dealing with ESLD.

thanks bblt! smile.
zo

Zo, any new news or are you holding your breath until September 18th..

Is there any chance, like some others that another TP center would be more generous with thier analysis of your TP status?

Hugs to you,

Mama Lama