Hep C Discussion Forum

mallani · Guru

RE: I guess it was to good to be true.

wmlj1960 · Moderator

Dzdayscomin wrote:
I can tell you one thing I'll be learning a lot more about it in the next week....thats for sure...then I can answer a whole bunch of these questions.

I can certainly understand that. Keep us informed! smile

Isiscat2011 · Guru

You are right, Duane. Lots of speculation here including by me. I'll speculate one last time by saying that I think lesions are fairly common in cirrhotics and most are not malignant.

Also, I believe PET scans are good at finding cancer cells that have metastasized to other locations in the body but not so good at diagnosing primary liver cancer. I read that here: http://www.onhealth.com/liver_cancer/page6.htm

'Nuff speculation. I'm looking forward to reading Malcolm's take on all this.

Dzdayscomin · Senior Member

http://www.umphysicians.org/cancercare/providers/chinnakotla-srinath-md/index.htm The above is not my doctor, but he is the surgeon if I get to transplant. Again I'd love for Malcom to chime in here, as I believe he could probably tell us a lot more about the cancer thing, I don't recall their being any discussion on a PET scan, as I understand it MRI with contrast shows all they need to know. I believe that any lesion that develops in a cirrhotic liver is pretty much considered a malignant cancer and is dealt with as such, especially If they cannot do biopsy, I also think I remember them saying that once a cancer is detected in the liver, biopsy is out due to the risk of spreading it and the treatment of such cancer is not a whole lot more extreme than the biopsy. Please keep in mind I really am not qualified to do more than speculate on all this..but I can tell you one thing I'll be learning a lot more about it in the next week....thats for sure...then I can answer a whole bunch of these questions.

Gator Man · Senior Member

Dzdayscomin wrote:
The nice part about this (if there is one) is this is not one doctor but a whole team of them at two hospitals, so the 2nd opinion is embedded in the the path, im not asking for it because they already are doing it, they know my spouse and all she knows about IR etc..they are gonna be damn sure that they take the best course of action.
I have complete confidence in all my care givers so I'm ok with their decisions, i'm the wishy washy one here just not feeling I know enough, although I'd never have enough info and I can only process so much at once.
I'm sure it will all be handled properly.....thanks for all the input people.

Very good. I think half of the battle is finding doctors and a facility where you can rely on their advice without too much need to second guess everything. It looks like you are at the right place, so ignore my suggestion about the Mayo Clinic.

wmlj1960 · Moderator

maddie wrote:
Duane, since you were told more lesions are highly likely in the future, are they planning on doing a PET scan? I believe the imaging technique in a PET gets down to the cellular level. So I would think it can detect the earlier onset of a cancer even before showing up in a CT scan. Would this increase MELD points?? Maybe its a dumb question but I would let them educate me.

I found this HCC information on UCSF's site and it tends to agree with you maddie about PET being a preferred technique for determining malignancy?

PET scan (positron emission tomography scan): A procedure to find malignant tumor cells in the body

My reading comprehension is awfull so tell me if I'm reading this right?

Isiscat2011 · Guru

Here is a link with some information about liver cancer from the UM. Looks like an excellent facility, Duane. I'm sure they are going to take good care of you.

http://www.umphysicians.org/cancercare/cancer-information/gastrointestinal-cancers/liver-cancer/

Isiscat2011 · Guru

wmlj1960 wrote:
I'm curious as to what is malignant and whats not? Can Hepatocellular Carcinoma be malignant or benign either way, or is it referred to by a term other than HCC if it's benign?

Hi Mike:

I don't know much about this either but my understanding is that if there is a definite HCC diagnosis then the tumor is believed to be malignant. Malignant means the tumor is cancerous and benign means it is not. Whether a mass is believed to be malignant or benign is essentially a probability rating based on a complex set of factors.

I wasn't clear on whether the tumor had been definitively diagnosed yet as malignant or what the margin for error is in the diagnosis. As far as I can tell there is some margin of error but it is generally small if they have diagnosed it as HCC.

wmlj1960 · Moderator

Dzdayscomin wrote:
Good question, they never said anything about whether or not it was malignant, which leads me to believe they already know (I don't know how they tell) Treatment will most likely be Ablation and or embolization or a combination of both.
I won't know until probably late today or tomorrow.

Hi Duane,

I'm curious as to what is malignant and whats not? Can Hepatocellular Carcinoma be malignant or benign either way, or is it referred to by a term other than HCC if it's benign?

One reason I ask is that my MRI "Final Report" on 7/7/14 says, "Cirrhotic liver with indeterminate lesion in segment 5, for which close attention on followup is recommended. There is no definite hepatocellular carcinoma".

Then on 8-26, my Dr told me that he did not know yet if this will be a malignancy case, and is waiting to see what is found at my next MRI on 10/1.

So does indeterminate mean they don't know if it's malignant or not, or does it mean that they can't determine if mine will progress into a tumor?

So if indeterminate means they don't know about malignancy or not, then does your paperwork mention indeterminate anywhere on the MRI "Final Report"?

I hope I didn't make that too confusing because ALL this HCC stuff confuses me, and I also hope your tumor is benign!!! smile

-- Edited by wmlj1960 on Monday 8th of September 2014 11:28:56 PM

Dzdayscomin · Senior Member

On the benign malignant issue,I asked and I was told that rarely there are benign tumors in primary liver cancer of cirrhotics.

bassetgirl · Veteran Member

And Duane, another major good thing is that you've reached SVR- so if you have to have a transplant, that's a huge advantage- nothing attacking your brand new liver! That's one reason I'm hoping for SVR too-

Dzdayscomin · Senior Member

The nice part about this (if there is one) is this is not one doctor but a whole team of them at two hospitals, so the 2nd opinion is embedded in the the path, im not asking for it because they already are doing it, they know my spouse and all she knows about IR etc..they are gonna be damn sure that they take the best course of action.

I have complete confidence in all my care givers so I'm ok with their decisions, i'm the wishy washy one here just not feeling I know enough, although I'd never have enough info and I can only process so much at once.

I'm sure it will all be handled properly.....thanks for all the input people.

bassetgirl · Veteran Member

maddie wrote:
Duane, since you were told more lesions are highly likely in the future, are they planning on doing a PET scan? I believe the imaging technique in a PET gets down to the cellular level. So I would think it can detect the earlier onset of a cancer even before showing up in a CT scan. Would this increase MELD points?? Maybe its a dumb question but I would let them educate me.

Hi Maddie- based on my experience over the past months with diagnosis by radiological readings, my understanding is that MRI w/wout contrast is the preferred method of evaluating these small liver lesions (although I've also had ct scans)- an existing lesion gives off signals (washout, etc.) that can be interpreted and allows the radiologist to rate the likelihood of malignancy- my initial readings were consistant at LRAD 4 out of possible 5, so I was fearful of the worst. After liver inflammation subsided during treatment with Sovaldi/Olysio, the readings went to nothing. I've now had two MRI's in a row showing no suspicious signals, and no growth of the lesion, so the transplant specialists are now considering the lesion to be benign, although I still have to have MRI's every 3 months for the next 2 years.

That's just my experience- I know Duane's doctors will make the best recommendations for treatment based on his situation- and of course, if he's not comforatble with what he's being told, he can go to Mayo as Isiscat suggested for a 2nd opinion-

maddie · Senior Member

Duane, since you were told more lesions are highly likely in the future, are they planning on doing a PET scan? I believe the imaging technique in a PET gets down to the cellular level. So I would think it can detect the earlier onset of a cancer even before showing up in a CT scan. Would this increase MELD points?? Maybe its a dumb question but I would let them educate me.

Isiscat2011 · Guru

P.S. My understanding is that the AFP is not considered a reliable indicator of HCC in cirrhotics because cirrhosis alone can cause AFP to run very high. I'm not sure that lack of reliability due to inflated AFP values applies here, however, where your AFP has been consistently decreasing.

Hopefully, you will get your most recent AFP values today and doc can explain the AFP connection.

Isiscat2011 · Guru

Dzdayscomin wrote:
The fact there was nothing there in June and now to have lesion at 1.7 my AFP was 10.6 last known result (10 days ago, latest is still pending) its been as high as 300+ in the past so this really surprised me, and I've come to not put much stock in AFP, from what I understand its not that reliable in cirrhotics.

This has me perplexed as well, Duane. Your AFP has been going down, down, down, and your imaging 3 months ago revealed nothing.

My understanding is that an HCC diagnosis can be made with a high degree of medical certainty with imaging alone (in your case MRI) but I wouldn't feel that I had enough information yet to make a treatment decision. They should be able to give you more specifics very soon. Is it possible to do a CT scan in addition to the MRI?

Also, I understand that you have confidence in your team and their assessment is probably correct, but for something this serious I'd get a second opinion asap for purposes of confirming the diagnosis and for treatment recommendations. If you are indeed able to get to Mayo they have a world-class liver center. The last thing you can worry about is offending your current docs, if that is a concern, and I doubt they would be offended anyway.

I'm not intending to evade your request for our personal opinions on treatment options but I need more information to answer.

Dzdayscomin · Senior Member

bassetgirl wrote:
Dzdayscomin wrote:
Good question, they never said anything about whether or not it was malignant, which leads me to believe they already know (I don't know how they tell) Treatment will most likely be Ablation and or embolization or a combination of both.
I won't know until probably late today or tomorrow.
Hi Duane- as I said in my previous post, even though the MRI LRAD score was 4 out of 5 for my tumor, and my AFP tumor marker was sky high, they are now considering my tumor benign based on continued MRI follow up- they would not biopsy for fear of spreading a malignancy, but without biopsy they were left with radiology to diagnose- is that what they're basing your diagnoses on?

Yes for all the same reasons, they have never been willing to risk biopsy due to Platelets in the low 50's and high INR.

The fact there was nothing there in June and now to have lesion at 1.7 my AFP was 10.6 last known result (10 days ago, latest is still pending) its b een as high as 300+ in the past so this really surprised me, and I've come to not put much stock in AFP, from what I understand its not that reliable in cirrhotics.

I have a high level of confidence in the team of specialist working with me on this, if they say wait it will be more grueling than the HEP C thing because Hep is slow and cancer can be quite fast....they said they can contain this with a high level of confidence.....but they are on the other side of the outcome.

bassetgirl · Veteran Member

Dzdayscomin wrote:
Good question, they never said anything about whether or not it was malignant, which leads me to believe they already know (I don't know how they tell) Treatment will most likely be Ablation and or embolization or a combination of both.
I won't know until probably late today or tomorrow.

Hi Duane- as I said in my previous post, even though the MRI LRAD score was 4 out of 5 for my tumor, and my AFP tumor marker was sky high, they are now considering my tumor benign based on continued MRI follow up- they would not biopsy for fear of spreading a malignancy, but without biopsy they were left with radiology to diagnose- is that what they're basing your diagnoses on?

Dzdayscomin · Senior Member

Good question, they never said anything about whether or not it was malignant, which leads me to believe they already know (I don't know how they tell) Treatment will most likely be Ablation and or embolization or a combination of both.

I won't know until probably late today or tomorrow.

Isiscat2011 · Guru

Hi Duane:

I hope this isn't a really dumb question but is it still possible that the lesion is not malignant? What exactly is the treatment they would be doing?

bassetgirl · Veteran Member

Dzdayscomin wrote:
Well just got back from the hospital and was reminded yet again that I don't know as much about all this stuff as I sometimes think I do.
So the lesion (tumor or whatever) is 1.7 cm so according to the UNOS that does not qualify for exception points to the transplant MELD scoring, it has to be > 2.0 cm so I'm again in no mans land on course of action.....do you wait until it's > 2.0 and then treat it to get the points? or do you treat now and miss out on getting those points but wipe it out before it advances ? More lesions are highly likely in the future too.
I really don't know what direction to take
The 2 IR docs, my liver Doc, who is the chair for the liver transplant board, and the experts at the U of MN transplant center of excellence will be getting together late today and I should know tomorrow what their recommendations are.
So what would you do if it were you? I still think hanging on to the liver I have as long as it's functioning is the best, but then there is the thought that the better your condition going into the transplant the better the outcome is likely to be.....nothing can ever be a simple yes or no....there are always these options to consider, drives me nuts !
Duane

I would take the doctors recommendations, but this is what I was told about my 1.5 lesion which showed up radiologically LRAD 4 out of 5( 80% chance that it was malignant). My AFP(tumor marker) was also around 350 (normal is around 10 I think). I was prepared for the worst. They would not biopsy for fear of spreading a malignancy, so they started monitoring it with CT and MRI every 3 months.

They told me that when my lesion got to 2.0 they could do TACE treatment to slow it down. I would get 22 points for the MELD score and then 3 points every month until a transplant was available. Because I'm cirrhotic, they did not want to remove the tumor because I might not have enough functioning liver left, and also I would probably form more tumors. So treating with TACE and transplant would be my best bet.

During treatment with Sovaldi/Olysio, the inflammation in my liver decreased, and the MRI readings started changing: I've had two now that show no tumor growth, and the LRAD readings have gone to nothing. My AFP is also down to 20. They are now thinking the tumor is benign, and I am off the transplant list for now although they will continue to monitor.

So that is my experience.

I will be interested in what the doctors tel you today. Good luck to you, you're in my prayers.

Gator Man · Senior Member

Dzdayscomin wrote:

I really don't know what direction to take
The 2 IR docs, my liver Doc, who is the chair for the liver transplant board, and the experts at the U of MN transplant center of excellence will be getting together late today and I should know tomorrow what their recommendations are.
So what would you do if it were you? I still think hanging on to the liver I have as long as it's functioning is the best, but then there is the thought that the better your condition going into the transplant the better the outcome is likely to be.....nothing can ever be a simple yes or no....there are always these options to consider, drives me nuts !
Duane

That's a tough one Duane. I guess the first thing is see what the recommendations are which may streamline the decision tree. Without knowing more, I probably would treat now and play the waiting game. This is certainly a situation where you need medical advice you can trust. Even with the excellent doctors and facilities you currently have, I wouldn't rule out getting another opinion. Since you are in MN, Mayo Clinic could be a possibility for a consult.

Dzdayscomin · Senior Member

Well just got back from the hospital and was reminded yet again that I don't know as much about all this stuff as I sometimes think I do.

So the lesion (tumor or whatever) is 1.7 cm so according to the UNOS that does not qualify for exception points to the transplant MELD scoring, it has to be > 2.0 cm so I'm again in no mans land on course of action.....do you wait until it's > 2.0 and then treat it to get the points? or do you treat now and miss out on getting those points but wipe it out before it advances ? More lesions are highly likely in the future too.

I really don't know what direction to take

confuse

The 2 IR docs, my liver Doc, who is the chair for the liver transplant board, and the experts at the U of MN transplant center of excellence will be getting together late today and I should know tomorrow what their recommendations are.

So what would you do if it were you? I still think hanging on to the liver I have as long as it's functioning is the best, but then there is the thought that the better your condition going into the transplant the better the outcome is likely to be.....nothing can ever be a simple yes or no....there are always these options to consider, drives me nuts !

Duane

MzmiffY · Veteran Member

Duane,

Please lean on us whenever you need...people care deeply.

In my thoughts,

xx

Mike, thinking of you also...

-- Edited by MzmiffY on Monday 8th of September 2014 10:54:17 AM

Cinnamon Girl · Guru

So sorry you`ve had this news, Duane, and my heart goes out to you. You know you have our full support here and it sounds like you have a wonderful wife, caring friends and an excellent healthcare team in your corner.

Stay strong and be kind to yourself, and use this forum as much and whenever you want to. Hold on to that great attitude and try to include as many things that bring you calm and joy in your daily life as possible...you`ll get through this! Jill x

Milliganus · Senior Member

Hang in there Duane. My prayers are with you. Each day is a gift for us. I'm grateful for this board and the support we find here. We are all in this together.

OldenSlow · Senior Member

Well crap, Duane. Hate to hear this. You have a strong spirit and will no doubt find a way to cope, but sure wish you didn't have to.

wayne

Dzdayscomin · Senior Member

maddie wrote: Wish you didn't have to be going through all this.

You know what? I just thought about something....we are all going through this!

I'm just the point man......... confuse

Thanks Maddie and Tig and everyone else.

Duane

maddie · Senior Member

Darn it Duane. Very sorry about your lousy news. Wish you didn't have to be going through all this.

Tig · Admin

Hey Duane,

Dude.... this kinda sucks eh? I like the way you think and the way you're handling it. I know exactly what you mean when you explained your wife's work environment and how the rumor mill and the chatter takes on a life of it's own. I think you've really got a great team working on this and it sounds like you're considered family around that place. That means a lot and I have to believe, like you do, that you're in good hands. You've got a big family right here wishing, hoping and praying for you Brother. Hold onto the positive and believe! We're always here my friend...

Tig

Groupergetter · Guru

Hoping and praying this works out for you Duane. Every day is a gift.

Dzdayscomin · Senior Member

You are all such wonderful people!

I am probably one of the luckiest people on this board when it comes to health care teams.

Here is an example ...my wife is an RN in Interventional Radiology dept. at the very prestigious MN hospital I'm being cared for at, the 2 senior IR docs are fabulous, as well as the tech teams, along with my liver doc and his Nurse coordinator, some are not just providers but friends of my spouse, I get my lab results in hrs not days or weeks, my imaging is read before I can get off the MRI table in some visits, but today's was different, when my wife asked for results they said they hadn't read it yet ...too busy etc...but it turned out that was not the case they had already read it and called in their peers to be double sure what they were looking at, and although they knew by probably 8am (scan was at 6am) they waited to talk to her until about 30 min before her shift was up at 3pm and got together and let her know so she wouldn't be upset all day and or have it become fodder on the unit (if you know how nursing units are you'd know what I mean they'd know something was up because my wife can be very emotional when it comes to family) they made sure she was ok mentally and able to drive home, and then they called me while she was in transit to tell me. (I've given my consent for them to tell her anything and everything whenever).

I already know they will most likely do ablation I think he said laser? But I was numb and maybe that was the wife that said that or I just dreamed it up because I think I only heard the (you have cancer part and my mind shut down) this will very likely happen next week but I see them 8am Monday morning to get the plan.

So I guess if i'm gonna have all this crap happen it's so nice to not worry about being just another patient to these people, they genuinely care about me because they care about my spouse.

That's how you people make me feel here...you can feel when people care and understand...Thank You all so much for all the kind words and support. I think this is gonna get rocky from here on out and anyone that remembers one of my 1st posts here on this forum was I scared s**tless of having a transplant. ..Anyway thanks for letting me ramble.

wmlj1960 · Moderator

I too am sorry to hear this Duane. My last MRI showed lesions so I've been concerned about this HCC thing although I know very little about it. I hope you will keep posting here as always because I want to know the details of how you will beat this, so I can follow your lead if / when needed. Hang in here my friend! smile

Fireman Rob · Senior Member

Duane,

I'm so sorry you have encountered this setback. Keep fighting and don't give up. If you ever need someone to vent to I'm here. Hang in there friend! This is far from over.

-Rob

Mugsy · Senior Member

I am really sorry you have to deal with this. Like others have said, this is something a lot of us are at risk for. You seem to be a kind and gentle man and I am sure you will come through this, too. Please keep us updated, ok?

Mary

bassetgirl · Veteran Member

I'm so sorry to read this- you are in my prayers.

hrsetrdr · Guru

Duane, It's like a sock in the gut to hear this, I'm so sorry. My brother in law beat HCC a couple years ago, and you will too!

Hang in there bro.

Isiscat2011 · Guru

Oh Duane, I'm so sorry about this news. This is one of the many big fears every cirrhotic HCV positive person lives with and now you are facing it head on.

I don't know if you will be eligible for a resection surgery or not. If not, you will definitely be high on the transplant list, and being SVR will be good for that too. My PCP told me (several times actually) about one of his patients who had a liver resection 5+ years ago and he is doing just fine. He likes to tell me that this guy was in terrible shape, very overweight and never took care of himself, and he is still right as rain. Doc says if that guy can prevail then anyone can. I adore him for saying it and he is probably right. We never know what the future will hold but it often turns out so much better than our worst fears.

You hang in there my friend, and please don't isolate yourself, or take a turn to negative-land. Life is a gift. I think you are terrific, Duane, and you will be ok.

TazKat · Senior Member

Sorry to hear. But know that God is still doing miracles. Praying here in Mississippi.. smile

Huey · Guru

I am so sorry to hear this. The same thing can happen to any of us as far as i know, I relay don't know that much about HCC

Peter M · Veteran Member

Sorry to hear that, Duane. Sending good and positive thoughts for the best of all possible outcomes for this upsetting situation.

mallani · Guru

Hi Duane,

Really sorry to hear that. That's probably the worst news a HepC patient can get.

When I worked as an Interventional Radiologist, I did a lot of TACE procedures, with a catheter in the hepatic artery. I mostly used Gelatin/Cisplatin ablation, but sometimes used the Therasphere Yttrium-90 glass spheres. Hope that does the job until you get your transplant. Best of luck buddy.

Dzdayscomin · Senior Member

Yes the way I understand it, you are automatically given a score of 22, and it goes up every 3 months or each time your evaluated....what sucks is I thought I was down to 11 but they didn't do the creatinine at my 12 week svr test so I plugged in my June value ,

Today I'm 14 both my ast and alt were 37 and 33 respectively my INR UP TO 1.6 and plates down 53 ALK PHOS has always been up, at 236 today, billy jumped to 2.0 albumin down to 3.2 but now transplant is more imminent with this.

I was really praying to skip that whole part.

Gator Man · Senior Member

I'm sorry about the news, but keep believing you can beat it. With a tumor less than 5 cm, aren't you still transplant eligible under the Milan criteria and don't you move up on the priority list?

Dzdayscomin · Senior Member

So I had my 3 month transplant labs and MRI this morning, and I just got the call I have HCC 1.7 cm in the right lobe....if I could swear here I would, but I guess that's life, no good news is free......so I thought I was gonna beat this bastard of an illness, but it's got bound and determined to get me, I guess I'll find out what there gonna do on Monday, probably Therasphere targeted radio embolization.

Darn it !

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