The procedure is done guided by CT and Ultra sound so they can do it( the remeasure and chest CT) right there, then if it's at or over 2cm i jump to MELD of 22 and then get additional points every 3 months until i hit the top of the list while I'm more healthy and will tolerate the transplant much better than a slow decline in health while the MELD stays at 14 or rises much slower.
The only cure is transplant and how many ablations or embolizations can you do before the liver just fails.
They want to get me transplanted to so I can have the best chance for a longer and better life, rather than a torturous decline in health for many yrs, also there are no guarantees that an organ becomes available when you are in dire straits so this essentially gives you better chance at overall best outcome.
Also if you look at a 0 to 1.7 in less than 90 days as a % adding 3 weeks is something like 15-20 % and that could easily put me over that 2cm size.
It can be overwhelming at times trying to figure all this out because nothing is as mathematical as I can tend to make it.
I'll check in tomorrow and give ya all the details if i'm able.
Duane
Isiscat2011 said
Sep 23, 2014
Hi Duane:
Sounds like Doc Oncologist knows just what to do. Those men and women who work in oncology are pretty remarkable people. So, tomorrow it is some imaging of your liver, a quick chest CT, and the RFA. Then home to get into your jammies and watch some TV. They will probably give you some good pain drugs and I'd take all that is safe to take. Don't want you to be in pain. I really like what he said about this being curative; this may be the end of it.
Get a good night's sleep and know that you will be safe and sound in your bed, minus the tumor, by tomorrow evening. I'll be thinking of you and wishing you only the best. :)
wmlj1960 said
Sep 23, 2014
So what's involved with the re-measure, another scan? And when is this remeasure and the chest CT going to happen?
I don't understand why the size of the lesion is so crucial at this point (other than exception points). It seems like they would be more interested in whether metastasized or not, and if not, going ahead with the RFA in a timely manner. Anyway, that just shows my ignorance and I certainly appreciate your updates so we can learn from your experience.
The recovery doesn't sound too bad so that's hopefully good.
Get some rest and thanks for the update Duane.
Dzdayscomin said
Sep 23, 2014
Ok, well after a long wait as they were behind and i was shoved into the schedule just last week this is what I learned.
He wants them to remeasure prior to procedure as these lesions I'm told grow exponentially when they are smaller due to good blood flow to the tumor, and that the written report he has says that the lesion nearly three weeks ago stated less than 2cm instead of stating an exact size, although i have a report that explicitly states 1.7cm so that may get me the exception points to transplant after all? we shall see.
Then he wants a chest CT done as well while I'm there, and then after i recover from this.....a bone scan will be done, to as he said ( be sure that hopefully it has not metastasized (sp )?)
He was glad to hear they were doing a RFA rather than embolization as that tends to destroy more real estate than the precision of the RFA.
Likely hood of reoccurence is high due to the fertile environment of a cirrhotic liver, but again it's not a given and he looks at it as more of a curative approach than a pallative one, so that was nice to hear....i guess.
As far as recovery he said a few days, and to expect some swelling and localized abdominal pain and possible muscle spasm, which if they are using Microwave( which is what I remember hearing the day they told me about all this) would be less likely.
Anyway that's all I can remember right now, so now it's time to eat something and get some sleep, or try to, so I'm not bitchy in the morning to the Mrs.
Duane
Peter M said
Sep 23, 2014
Looking forward to reading about good outcomes of your meeting with the oncologist and the ablation. Sending positive thoughts!
Isiscat2011 said
Sep 23, 2014
It is a rough road to be sure, Duane, but it will also be filled with times of reprieve, moments of happiness and joy. Human beings are so incredibly adaptable and they get stronger to handle the rough times. I know you are a strong person already. Hang in there and please give us an update after you see the Oncologist.
Dzdayscomin said
Sep 23, 2014
Thanks all,
My wife has kept asking me the last week if I am nervous about this, and I would say..."nope can't do anything about it " but today I have felt a little bit of nervousness mainly because I know this is the beginning of another long road that gets rougher as you go.
So I think today's appt with the Oncologist will either be settling or disturbing and I don't know which...but only 5 hrs and I'll have that answer.
Your prayers and thoughts are just great thank you all very much !
Duane
Fireman Rob said
Sep 23, 2014
Duane,
We're here fighting with you- don't forget that. I'm glad you're in good hands with your medical team. That definitely makes it easier to fight the battles ahead knowing you're in the care of true professionals. Keep educating people like me with your inspiring posts.
Best,
Rob
Gator Man said
Sep 23, 2014
Duane, it looks like you have superb medical care and your treatment team is now complete. As part of the "extra team", we're always here to help in any way we can. Thanks for keeping us posted.
Groupergetter said
Sep 23, 2014
We're praying for you Duane. Hope all goes well.
wmlj1960 said
Sep 23, 2014
Dzdayscomin wrote:
Thank you.....I will update all tomorrow night on what the oncologists wanted so anyone finding themselves in a similar situation, will have some expectations as to what they do or plan, plus i have some questions on recovery afterwards and possible sx and the like.
I, for one, be waiting for the update. My thoughts are with you!
Dzdayscomin said
Sep 22, 2014
Thank you.....I will update all tomorrow night on what the oncologists wanted so anyone finding themselves in a similar situation, will have some expectations as to what they do or plan, plus i have some questions on recovery afterwards and possible sx and the like.
Again Thanks.....its nice having this extra team here to help a person think of questions to ask etc. ...
Duane
Tig said
Sep 22, 2014
Isiscat2011 wrote:
P.S. I'd be more concerned if they didn't have an Oncologist in on all of this! I think you are in good hands there. :)
Agreed!
Isiscat2011 said
Sep 22, 2014
P.S. I'd be more concerned if they didn't have an Oncologist in on all of this! I think you are in good hands there. :)
Isiscat2011 said
Sep 22, 2014
Dzdayscomin wrote:
So I got a call from my Oncologist's office who I have not seen since the 1st scare of this HCC about a little over a year ago (???date) and he wants to see me before Wednesdays procedure??
Anyone know what or why it would be so important to rush me into his schedule before the Ablation ?
I'm just curious what he would be needing prior to it? Also do you think they will do a PET scan after to look for the possibility of it spreading
I can't say with certainty but it seems to me it would be standard procedure to have the Oncologist in the loop on this. He is the expert in cancer. He probably just wants to consult with you about your new diagnosis and the Ablation you will be having on Wednesday. No reason to read anymore into it at this point. I'd ask him about the PET scan when you see him. It just sounds like your medical team is on top of things to me, Duane.
Dzdayscomin said
Sep 22, 2014
So I got a call from my Oncologist's office who I have not seen since the 1st scare of this HCC about a little over a year ago (???date) and he wants to see me before Wednesdays procedure??
Anyone know what or why it would be so important to rush me into his schedule before the Ablation ?
I'm just curious what he would be needing prior to it? Also do you think they will do a PET scan after to look for the possibility of it spreading ?
Thanks
Duane
-- Edited by Dzdayscomin on Monday 22nd of September 2014 02:37:36 PM
bassetgirl said
Sep 14, 2014
Dzdayscomin wrote:
Surgery is set for 9/24/2014 for RFA, so we will see how this goes, I'm very confident they will be able to kill off this lesion, my main concerns are the low plates at 53
Hi again Duane- when I was going through transplant evaluation because of suspected liver malignancy, I was told that with platelets around 50 surgery wasn't a concern (mine are around 60 right now). They also said transfusions were not a good idea because adding someone else's blood antibodies to your own only complicates transplant rejection issues- if your platelets would get really low I think they have other drug options which they would try before transfusion- but as I said , from the information they gave me 50 is OK- you can ask them about this the next time you meet.
I kept a list of questions that I added to as they popped into my mind, so that when I met with the doctors I wouldn't forget anything.
Good luck with all of this, needless to say I'm really interested in how this all goes for you because of my own situation.
wmlj1960 said
Sep 14, 2014
Dzdayscomin wrote:
As always Isis thanks for the encouragement, I'm sure I'll learn a whole bunch more about this stuff as I go thru it, and of course I'll share it so that others that may find themselves in my canoe will have an idea what to expect.
Thank you Dear!
Sorry I haven't posted in a few days but I had to get my stuff moved to another city.
I too know very little about this HCC stuff, but I can sure help paddle a canoe and I can learn.
Although my Dr has not gone into detail, and won't until it's the appropriate time, he did tell me way before hand (in February) that I would likely develop HCC, and that it can be dealt with as long as it's detected early and there will be no reason to be alarmed. Now that a lesion has been found, his plan remains the same (other than 1/2 the wait time between MRI scans now).
He has been 'bulls eye right' about everything so far, and I've just gotta believe he knows what he's doing. If this lesion is no reason for alarm in him, then I should not make it out to be one, therefore stressing myself out for no reason. Yes, sometimes Google is not my friend. The only thought I've put into HepC the last few days is to make sure I take my Tx meds on time. and that has produced an appreciative amount of peace and serenity within myself during an otherwise stressful ordeal of moving with no help.
Remember it was not there june 5th on that scan so it's been a rapid development.
Rapid yes, but you were on the same scan schedule as I - once per three months, right. So it still was detected early ... hence it is very treatable no matter how rapid the growth.
We'll just keep on paddling until there is no more creek I guess.
When I was ~22 yo, 2 friends and I dropped a truck off beside an 'access point' of Wolf river, just north of Collierville TN. We then hauled the canoe in another truck to a starting point miles up river and embarked on a canoe trip through an untraveled section of the river. We started with plenty of supplies but lost many of those during canoe overturns due to logs, thick brush and unruly rapids. We had obviously bitten off more than we had bargained for but we had to keep going - We didn't have cell phones in 1982 to call for help.
We ended up making it through sometime the next day, and I learned some stuff from that ordeal - #1 have a plan before you start (although ours was not the best). and #2 stick to the plan even when there are many deterrents and no end in sight.
So hang in there my friend and don't Google yourself senile. We'll make it to that truck at the 'access point' with our transportation back to civilization in time.
Dzdayscomin said
Sep 13, 2014
Thanks to all for you insight, I keep getting reminded of how little I really know about all this stuff, it's just to much to wrap my mind around.
So that said getting these posts of information are truly helpful in trying to understand, google is not always your best friend when it comes to these things and can bring more stress...even though my wife works where I'll be treated you still don't get every detail and I don't want to be a pest to them asking questions that won't change or deter my path..
Again Thank You.
Duane
mallani said
Sep 13, 2014
Hi Duane,
Cirrhosis involves all the liver lobes- the right, left, caudate and quadrate lobes. On CT and MRI, one of the more reliable signs of cirrhosis is shrinkage of the Right liver lobe, with hypertrophy of the Caudate lobe. Certain measurements can be taken and the caudate-right lobe ratio can be calculated.
HCC usually arises in a dysplastic nodule which may occur anywhere in the liver. All regenerating nodules have a high turnover of cells. Some nodules may not be functional eg the bile duct connections may be absent.
It is accepted that lesions <10mm in size are very difficult to see on imaging. The 6 months doubling time is just an estimate- it may be faster or slower.
In answer to an earlier question- unfortunately, HCC's may keep 'popping up'. Eliminating the virus will decrease liver inflammation and calm things down.
The role of AFP monitoring is controversial. As only ~50% of HCC's produce AFP, it's hardly reliable. HCV in itself and cirrhosis in particular, can cause AFP elevation. 6 monthly screening is the way to go for cirrhotics.
I don't think the platelet level is a concern. Cheers mate.
Isiscat2011 said
Sep 13, 2014
Dzdayscomin wrote:
Remember it was not there june 5th on that scan so it's been a rapid development.
I don't think it is necessarily true that it was not there on June 5th. It could have been there but wasn't discovered yet. It is tiny-- the size of a large pea or a small peanut-- The amount of time it takes to grow to this size probably varies. I don't know if the doubling rule applies early on, but if it starts say as the size of a pin head, and doubles every 6 months it would take a significant amount of time to grow to its present size.
This is why cirrhotics' AFP values are closely monitored; they could be elevated because of cirrhosis/hcv or it could be due to HCC. Your AFP decreased during and post tx; I'm not sure what the AFP values signify here but your AFP has been very high for some time.
Unfortunately, I don't think there are clear answers to all of these questions. Medicine has many grey areas. But it certainly seems feasible that some of your symptoms have been due to the HCC and that getting rid of it will cause you to feel better.
TazKat said
Sep 13, 2014
u are in my prayers. good results are coming. keep the faith!!
Dzdayscomin said
Sep 13, 2014
Remember it was not there june 5th on that scan so it's been a rapid development.
Isiscat2011 said
Sep 13, 2014
P.S. I'm sure it has already occurred to you that some of the symptoms you have had may have been caused by the HCC rather than the cirrhosis, Duane. If this is the case then getting rid of the HCC (along with the HCV) should significantly improve how you feel.
I am really hoping this is what happens and I don't believe it is just wishful thinking. I would ask my doc about this; I'll bet he agrees that you may actually start feeling much better once this HCC is eliminated.
Dzdayscomin said
Sep 13, 2014
As always Isis thanks for the encouragement, I'm sure I'll learn a whole bunch more about this stuff as I go thru it, and of course I'll share it so that others that may find themselves in my canoe will have an idea what to expect.
Thank you Dear!
Isiscat2011 said
Sep 13, 2014
I wonder if they could give you a platelet infusion, Duane? I am so sad that you are going through this.
On the positive side, RFA can actually improve quality of life by relieving the symptoms that are attributable to the HCC. Additionally, it is my understanding that RFA can decrease liver function damage. RFA really does appear to be a remarkable breakthrough in HCC tx and fortunately yours was found in plenty of time to have excellent results from RFA.
I know you are going through Hell but this could turn out so much better than you can imagine right now. Hang in there my friend.
Dzdayscomin said
Sep 13, 2014
Surgery is set for 9/24/2014 for RFA, so we will see how this goes, I'm very confident they will be able to kill off this lesion, my main concerns are the low plates at 53 and INR of 1.6 , and the fact that they said reoccurence is highly likely, this could be something I'm doing every 6 months until they destroy enough liver that transplant becomes more imminent...which doesn't sound like a whole lots a fun to me.
One thing I do wonder is if the lesion is in a dead (non functioning) part of the liver or in the good stuff? Or is there no definate line and cirrhosis is encompassing the whole organ or say like the left or right lobe etc....? So many questions
We'll just keep on paddling until there is no more creek I guess.
TazKat said
Sep 10, 2014
prayers to u!! I feel u will be just fine.. keep that faith buddy!!!!!!!!!!!! u got all of us praying & rooting for ya!!!! :)
Dzdayscomin said
Sep 10, 2014
mallani wrote:
Hi Duane,
If you're having RFA, ignore my comments. I thought you were having Therasphere. All the best.
Mal....I'm sure you may know all this but 9.3 in policys states the reason I don't get the exception points.
Also until yesterday night I wasn't sure how this procedure was done, I thought they were both done via trans cath but since then I've been educated by the Mrs. That it is percutaneous. However it sounds to me like even after doing this one, they feel pretty sure that there will be more on my next scans.
Is that pretty consistent with your experience?
Thanks
Duane
Groupergetter said
Sep 10, 2014
Duane, please keep us posted on the date. We'll be praying for you and your family. Sounds like you've already got the most important aspects covered. I'm reminded of what a friend said, "and lo I am with you always, even unto the end of the world"
mallani said
Sep 10, 2014
Hi Duane,
If you're having RFA, ignore my comments. I thought you were having Therasphere. All the best.
Isiscat2011 said
Sep 10, 2014
RFA sounds pretty awesome to me. It is minimally invasive and has an >85% success rate for completely eliminating small tumors. Here is some info:
RFA, and it sounds like they are making a small incision or using a small needle and going in to the liver that way percutaneously, guided by C T and Ultrasound , it could be trans catheter? but the GA is to keep you completely still so they don't hit and puncture something else
I am having my wife ask the IR doc which method they are using....this all happened pretty fast and that is a question I should get an answer for so thanks for raising the thought.
Duane
maddie said
Sep 10, 2014
The sliver lining in all this is that you have a wonderful wife as your advocate as well as an excellent team of doctors (and a supportive boss). Good luck with your decision, Duane. I am rooting and praying for you whichever choice you go with.
bassetgirl said
Sep 10, 2014
Duane, what procedure are they using: TACE (transarterial chemoembolization), RFA (radiofrequency ablation), PEI (percutaneous ethanol or acetic acid ablation), cryoablation? Or a combination of TACE and RFA?
mallani said
Sep 10, 2014
Hi Duane,
Good luck with the TACE. Not sure why you need a GA- it's just a catheter in the groin. I'd like to be awake and watch the monitor screen to make sure they've got the catheter in the correct artery.
I'm amazed by your story about tumour size, and the fact that 1.7cm is too small. Wow! Over here, for cirrhotics, we use the Milan Criteria which specifies the lesion must be <5cm, if single.
It's a great idea to get it ablated and hopefully you won't grow any more. Cheers buddy.
wmlj1960 said
Sep 9, 2014
Dzdayscomin wrote:
I have angels all around me.
It's not about us but those around us.
Dzdayscomin said
Sep 9, 2014
Almost forgot....I still have job and probably should go back to work until they at least get me scheduled, I honestly have not even thought about work since last Thursday.....and now I'll have this and of course pre op physical, and then I'll need time off after I'm sure so it's been pretty intrusive on work, but again I've been working at the same place for over 31 yrs and the family owners are as good as my med team, they have paid me and supported me all the way thru, so for all the bad luck I've had I have angels all around me.
Thanks be to God! And this forum
Isiscat2011 said
Sep 9, 2014
This does sound good, Duane. It sounds like the docs think your liver is doing relatively well, and it still could improve now that you are SVR, despite this new twist. I kind of like that they will be doing this procedure under general anesthesia. A nap for you and when you wake up it is done.
Yup, women on a mission are bad-asses. Those guys probably want to stay on her good side. lol
It has been a good day for you, all things considered, I hope. Have a good evening. :)
wmlj1960 said
Sep 9, 2014
Dzdayscomin wrote: but spreading is unknown it's different for everyone I guess.
With liver function improved as the result of SVR and less occurrence of new lesions, then seems like it would make sense that spreading chances would also be reduced.
LOL, I change my statement about looks like you have an excellent treatment team
to
Look like you have an excellent treatment team with an agenda, that agenda being 'staying out of trouble'
Dzdayscomin said
Sep 9, 2014
Isiscat2011 wrote:
P.S. Duayne: Did the docs have any ideas on how long it might take to metastasize, what the odds are that it will spread, etc? That seems like a very important factor here.
They doubling in 3-6 months is common but spreading is unknown it's different for everyone I guess.
Dzdayscomin said
Sep 9, 2014
Well, they already had their round table and just called me, and it has been determined that with the elimination of the Hep C we are going to treat now, as they feel I am too healthy for transplant at this point, so the best plan is to treat now and eliminate it, because improvement in liver function with clearing the Hep improves the chances of less lesions occurring. So all in all i'm happy with this plan because as bad as this liver is I've kinda become attached to it ;)...ok bad satire.
Anyway waiting on scheduling to call and give me a date they said in the next three weeks but if it's like everything else I wouldn't be surprised if it were early next week, I was told that all three docs are participating....I guess it helps when ur wife works IR at the hospital you are getting treated at.
I'm told it will be a CT/Ultrasound guided procedure under general anesthesia.
Like I said for all the bad news I'm lucky I get this kind of attention....either that or their scared of my wife lol
Anyway that's all for this episode.
Duane
Isiscat2011 said
Sep 9, 2014
P.S. Duayne: Did the docs have any ideas on how long it might take to metastasize, what the odds are that it will spread, etc? That seems like a very important factor here.
Isiscat2011 said
Sep 9, 2014
Hi Duane:
I want a play by play. :) Seriously, this is very educational and if it was me I would want people who are in similar boats to discuss it with. As close as we might be to family members talking to them about this stuff just isn't the same.
This is very good that they now have done 3 imaging tests. I feel so much more comfortable with that than with just the single MRI. Now it is just making the decision on when to begin treatment. Either beginning immediately or waiting till it hits 2.0 are both reasonable choices, IMO. I like the idea of you getting a bump up on the transplant list but, otoh, I'd like to see this tumor get blasted immediately. Such a difficult decision but you will reach the right choice for you and things will work out.
I'm interested to hear what the docs have to say. Getting them to talk about it between themselves and try to come to an agreement was an excellent call. I'll have to remember that one. Hang in there.
wmlj1960 said
Sep 9, 2014
Wow Duane. I know your starving for facts to base your final decision on, and rightly so. I wish I was more knowledgeable and could be of help, but I'll have to replace knowledge with cheer leading at this point. It sounds like you have an excellent treatment team to support you so I'm following what you do closely and cheering for your success in overcoming this thing.
Dzdayscomin said
Sep 9, 2014
Not that everyone wants a play by play here but here it is anyway......
I had an US and then they decided to follow that right up with a CT w/contrast to have what they called a third data point to confirm that the MRI, US, and CT all showed the same thing, and a verification of the location because of size (small) so then the main IR doc said lets go ahead and set up the ablation, at that point I asked about the pros and cons of waiting for it to come to a size worthy of the exception points and was applauded for asking that question, he said that he said "lets treat it" because he can , but waiting until it was larger than 2.0 cm is perfectly acceptable as he was fine with using ablation up to 3cm without any problems, he also said if we treat now or later the likely hood of another or more lesions is very high in the next scans as once this starts happening in a cirrhotic liver as bad as mine is they tend to just keep coming.
So after digesting all that I asked them to all sit down and ask themselves if it were them what would they do? And if they can come to an agreement then we will go with that...I'm in no hurry to get transplanted so if killing off a bunch of small ones over time that doesn't decrease the quality of life any further that would be fine with me, but I don't want it to be a situation where my heath is compromised to the point that it would effect the outcome of a transplant and recovery then waiting and getting the points to do transplant sooner is preferable.
They will call me when they reach their conclusion, and if I change my mind either way I still get to make the ultimate decision.
So that's it for today's episode thanks for tuning in !
Isiscat2011 said
Sep 9, 2014
Hi Duane:
I am very happy that they will be doing an ultrasound today. While the original diagnosis was probably correct there is a small margin of error particularly with a tumor <2.0. There are various guidelines for diagnosing HCC and sometimes a second imaging is mandatory to confirm the diagnosis.
Treating this quickly is important, IMO, because the last thing you want is for it to metastasize. Having said that, assuming the accuracy of the doubling rule, this tumor should be at 2.0 in a very short period of time. I would wait till it hits 2.0 and then treat it aggressively. That approach not only allows you to confirm that this is indeed a malignant tumor but also bumps you up on the transplant list. I would talk to my doc about this approach, possibly imaging it again in a few weeks, and if it is at 2.0 begin tx. You may get extremely lucky and have it turn out to be benign, but more likely, you will need to treat to try to keep it in check while you wait for the transplant.
Of course you need to follow your docs recommendations, but assuming you have some decisions to make, this is the way I would go based on what I know (which admittedly is not much).
Btw, I came across a really good article, written by the American Cancer Society, that discusses liver cancer in very accessible terms. It is about 50 pages but well worth the read for anyone who is interested. http://www.cancer.org/acs/groups/cid/documents/webcontent/003114-pdf.pdf
-- Edited by Isiscat2011 on Tuesday 9th of September 2014 06:33:33 PM
Dzdayscomin said
Sep 9, 2014
Thank you all for posting, and Malcom I wanted your input so that's not hijacking, I think the deal now is do they want to get me the exception points? As I said before 1.7 cm doesn't, but 2.0 cm does, then they can Ablate it or whatever, the likely hood of reoccurence is rather high the way I understand it, so if I keep treating small lesions unless my liver fails I'm gonna be hanging rather low on the transplant list where as If I wait until 2.0 I shoot up to 22 MELD and get the 3 points every month or 3 months? (Whatever that time frame is) which would likely get me transplanted in a yr. But then there is the spread issue and I assume that would matter where the lesion is located as I would think areas closer to higher blood flow would be more likely to spread (metastasize ) never black and white choices.....always a touch of gray.
Anyway apparently I gotta go back cause the IR guys want to ultrasound me today just waiting to hear what time.
bassetgirl said
Sep 9, 2014
mallani wrote: Lesions smaller than 2 cms may be tricky, but ~90% of HCC's should be correctly diagnosed. Sometimes, a dysplastic nodule may give a similar appearance. These lesions should be called 'suspicious' rather than 'indeterminate', and a followup study in 3 months should be advised.
Duane,The reason I keep posting on this thread is to give you hope for a good outcome. My 1.5 lesion was given LRAD 4 rating (5 being definitely malignant) with 3 consecutive MRIs, and I was being evaluated for liver transplant, with discussions about doing TACE if the lesion started growing. I was being monitored every 3 months. The first week in June, halfway through treatment with Sovaldi/Olysio with my liver inflammation diminished, the MRI indicated no suspicious signals. I really thought it was a mistake because by that time I had resigned myself to a worse case scenario of cancer and transplant. Last week I had another MRI confirming the June result.
I still have to be monitored every 3 months for the next 2 years, but for now I'm accepting the "benign" diagnoses, and they've stopped the liver transplant evaluation process.
So please keep in mind there is hope!
mallani said
Sep 8, 2014
Just to qualify 'The vascular pattern distinguishes it from benign lesions'.
This assumes the examination is done on a modern MRI machine, with appropriate pre-contrast scans, and the proper sequences after intravenous liver-specific contrast. Lesions smaller than 2 cms may be tricky, but ~90% of HCC's should be correctly diagnosed. Sometimes, a dysplastic nodule may give a similar appearance. These lesions should be called 'suspicious' rather than 'indeterminate', and a followup study in 3 months should be advised. Fortunately, with the modern machines, FNA (Fine Needle Aspiration) should not be necessary. There is a risk of 'seeding' tumour cells with this.
Some Radiologists think contrast-enhanced CT is as good as MRI. I don't. Sorry to hijack your thread, Duane.
The procedure is done guided by CT and Ultra sound so they can do it( the remeasure and chest CT) right there, then if it's at or over 2cm i jump to MELD of 22 and then get additional points every 3 months until i hit the top of the list while I'm more healthy and will tolerate the transplant much better than a slow decline in health while the MELD stays at 14 or rises much slower.
The only cure is transplant and how many ablations or embolizations can you do before the liver just fails.
They want to get me transplanted to so I can have the best chance for a longer and better life, rather than a torturous decline in health for many yrs, also there are no guarantees that an organ becomes available when you are in dire straits so this essentially gives you better chance at overall best outcome.
Also if you look at a 0 to 1.7 in less than 90 days as a % adding 3 weeks is something like 15-20 % and that could easily put me over that 2cm size.
It can be overwhelming at times trying to figure all this out because nothing is as mathematical as I can tend to make it.
I'll check in tomorrow and give ya all the details if i'm able.
Duane
Hi Duane:
Sounds like Doc Oncologist knows just what to do. Those men and women who work in oncology are pretty remarkable people. So, tomorrow it is some imaging of your liver, a quick chest CT, and the RFA. Then home to get into your jammies and watch some TV. They will probably give you some good pain drugs and I'd take all that is safe to take. Don't want you to be in pain. I really like what he said about this being curative; this may be the end of it.
Get a good night's sleep and know that you will be safe and sound in your bed, minus the tumor, by tomorrow evening. I'll be thinking of you and wishing you only the best. :)
So what's involved with the re-measure, another scan? And when is this remeasure and the chest CT going to happen?
I don't understand why the size of the lesion is so crucial at this point (other than exception points). It seems like they would be more interested in whether metastasized or not, and if not, going ahead with the RFA in a timely manner. Anyway, that just shows my ignorance and I certainly appreciate your updates so we can learn from your experience.
The recovery doesn't sound too bad so that's hopefully good.
Get some rest and thanks for the update Duane.
Ok, well after a long wait as they were behind and i was shoved into the schedule just last week this is what I learned.
He wants them to remeasure prior to procedure as these lesions I'm told grow exponentially when they are smaller due to good blood flow to the tumor, and that the written report he has says that the lesion nearly three weeks ago stated less than 2cm instead of stating an exact size, although i have a report that explicitly states 1.7cm so that may get me the exception points to transplant after all? we shall see.
Then he wants a chest CT done as well while I'm there, and then after i recover from this.....a bone scan will be done, to as he said ( be sure that hopefully it has not metastasized (sp )?)
He was glad to hear they were doing a RFA rather than embolization as that tends to destroy more real estate than the precision of the RFA.
Likely hood of reoccurence is high due to the fertile environment of a cirrhotic liver, but again it's not a given and he looks at it as more of a curative approach than a pallative one, so that was nice to hear....i guess.
As far as recovery he said a few days, and to expect some swelling and localized abdominal pain and possible muscle spasm, which if they are using Microwave( which is what I remember hearing the day they told me about all this) would be less likely.
Anyway that's all I can remember right now, so now it's time to eat something and get some sleep, or try to, so I'm not bitchy in the morning to the Mrs.
Duane
Looking forward to reading about good outcomes of your meeting with the oncologist and the ablation. Sending positive thoughts!
It is a rough road to be sure, Duane, but it will also be filled with times of reprieve, moments of happiness and joy. Human beings are so incredibly adaptable and they get stronger to handle the rough times. I know you are a strong person already. Hang in there and please give us an update after you see the Oncologist.
Thanks all,
My wife has kept asking me the last week if I am nervous about this, and I would say..."nope can't do anything about it " but today I have felt a little bit of nervousness mainly because I know this is the beginning of another long road that gets rougher as you go.
So I think today's appt with the Oncologist will either be settling or disturbing and I don't know which...but only 5 hrs and I'll have that answer.
Your prayers and thoughts are just great thank you all very much !
Duane
Duane,
We're here fighting with you- don't forget that. I'm glad you're in good hands with your medical team. That definitely makes it easier to fight the battles ahead knowing you're in the care of true professionals. Keep educating people like me with your inspiring posts.
Best,
Rob
Duane, it looks like you have superb medical care and your treatment team is now complete. As part of the "extra team", we're always here to help in any way we can. Thanks for keeping us posted.
We're praying for you Duane. Hope all goes well.
I, for one, be waiting for the update. My thoughts are with you!
Thank you.....I will update all tomorrow night on what the oncologists wanted so anyone finding themselves in a similar situation, will have some expectations as to what they do or plan, plus i have some questions on recovery afterwards and possible sx and the like.
Again Thanks.....its nice having this extra team here to help a person think of questions to ask etc. ...
Duane
Agreed!
P.S. I'd be more concerned if they didn't have an Oncologist in on all of this! I think you are in good hands there. :)
So I got a call from my Oncologist's office who I have not seen since the 1st scare of this HCC about a little over a year ago (???date) and he wants to see me before Wednesdays procedure??
Anyone know what or why it would be so important to rush me into his schedule before the Ablation ?
I'm just curious what he would be needing prior to it? Also do you think they will do a PET scan after to look for the possibility of it spreading ?
Thanks
Duane
-- Edited by Dzdayscomin on Monday 22nd of September 2014 02:37:36 PM
Sorry I haven't posted in a few days but I had to get my stuff moved to another city.
I too know very little about this HCC stuff, but I can sure help paddle a canoe and I can learn.
Although my Dr has not gone into detail, and won't until it's the appropriate time, he did tell me way before hand (in February) that I would likely develop HCC, and that it can be dealt with as long as it's detected early and there will be no reason to be alarmed. Now that a lesion has been found, his plan remains the same (other than 1/2 the wait time between MRI scans now).
He has been 'bulls eye right' about everything so far, and I've just gotta believe he knows what he's doing. If this lesion is no reason for alarm in him, then I should not make it out to be one, therefore stressing myself out for no reason. Yes, sometimes Google is not my friend. The only thought I've put into HepC the last few days is to make sure I take my Tx meds on time. and that has produced an appreciative amount of peace and serenity within myself during an otherwise stressful ordeal of moving with no help.
Rapid yes, but you were on the same scan schedule as I - once per three months, right. So it still was detected early ... hence it is very treatable no matter how rapid the growth.
When I was ~22 yo, 2 friends and I dropped a truck off beside an 'access point' of Wolf river, just north of Collierville TN. We then hauled the canoe in another truck to a starting point miles up river and embarked on a canoe trip through an untraveled section of the river. We started with plenty of supplies but lost many of those during canoe overturns due to logs, thick brush and unruly rapids. We had obviously bitten off more than we had bargained for but we had to keep going - We didn't have cell phones in 1982 to call for help.
We ended up making it through sometime the next day, and I learned some stuff from that ordeal - #1 have a plan before you start (although ours was not the best). and #2 stick to the plan even when there are many deterrents and no end in sight.
So hang in there my friend and don't Google yourself senile. We'll make it to that truck at the 'access point' with our transportation back to civilization in time.
Thanks to all for you insight, I keep getting reminded of how little I really know about all this stuff, it's just to much to wrap my mind around.
So that said getting these posts of information are truly helpful in trying to understand, google is not always your best friend when it comes to these things and can bring more stress...even though my wife works where I'll be treated you still don't get every detail and I don't want to be a pest to them asking questions that won't change or deter my path..
Again Thank You.
Duane
Hi Duane,
Cirrhosis involves all the liver lobes- the right, left, caudate and quadrate lobes. On CT and MRI, one of the more reliable signs of cirrhosis is shrinkage of the Right liver lobe, with hypertrophy of the Caudate lobe. Certain measurements can be taken and the caudate-right lobe ratio can be calculated.
HCC usually arises in a dysplastic nodule which may occur anywhere in the liver. All regenerating nodules have a high turnover of cells. Some nodules may not be functional eg the bile duct connections may be absent.
It is accepted that lesions <10mm in size are very difficult to see on imaging. The 6 months doubling time is just an estimate- it may be faster or slower.
In answer to an earlier question- unfortunately, HCC's may keep 'popping up'. Eliminating the virus will decrease liver inflammation and calm things down.
The role of AFP monitoring is controversial. As only ~50% of HCC's produce AFP, it's hardly reliable. HCV in itself and cirrhosis in particular, can cause AFP elevation. 6 monthly screening is the way to go for cirrhotics.
I don't think the platelet level is a concern. Cheers mate.
I don't think it is necessarily true that it was not there on June 5th. It could have been there but wasn't discovered yet. It is tiny-- the size of a large pea or a small peanut-- The amount of time it takes to grow to this size probably varies. I don't know if the doubling rule applies early on, but if it starts say as the size of a pin head, and doubles every 6 months it would take a significant amount of time to grow to its present size.
This is why cirrhotics' AFP values are closely monitored; they could be elevated because of cirrhosis/hcv or it could be due to HCC. Your AFP decreased during and post tx; I'm not sure what the AFP values signify here but your AFP has been very high for some time.
Unfortunately, I don't think there are clear answers to all of these questions. Medicine has many grey areas. But it certainly seems feasible that some of your symptoms have been due to the HCC and that getting rid of it will cause you to feel better.
u are in my prayers. good results are coming. keep the faith!!
Remember it was not there june 5th on that scan so it's been a rapid development.
P.S. I'm sure it has already occurred to you that some of the symptoms you have had may have been caused by the HCC rather than the cirrhosis, Duane. If this is the case then getting rid of the HCC (along with the HCV) should significantly improve how you feel.
I am really hoping this is what happens and I don't believe it is just wishful thinking. I would ask my doc about this; I'll bet he agrees that you may actually start feeling much better once this HCC is eliminated.
As always Isis thanks for the encouragement, I'm sure I'll learn a whole bunch more about this stuff as I go thru it, and of course I'll share it so that others that may find themselves in my canoe will have an idea what to expect.
Thank you Dear!
I wonder if they could give you a platelet infusion, Duane? I am so sad that you are going through this.
On the positive side, RFA can actually improve quality of life by relieving the symptoms that are attributable to the HCC. Additionally, it is my understanding that RFA can decrease liver function damage. RFA really does appear to be a remarkable breakthrough in HCC tx and fortunately yours was found in plenty of time to have excellent results from RFA.
I know you are going through Hell but this could turn out so much better than you can imagine right now. Hang in there my friend.
Surgery is set for 9/24/2014 for RFA, so we will see how this goes, I'm very confident they will be able to kill off this lesion, my main concerns are the low plates at 53 and INR of 1.6 , and the fact that they said reoccurence is highly likely, this could be something I'm doing every 6 months until they destroy enough liver that transplant becomes more imminent...which doesn't sound like a whole lots a fun to me.
One thing I do wonder is if the lesion is in a dead (non functioning) part of the liver or in the good stuff? Or is there no definate line and cirrhosis is encompassing the whole organ or say like the left or right lobe etc....? So many questions
We'll just keep on paddling until there is no more creek I guess.
prayers to u!! I feel u will be just fine.. keep that faith buddy!!!!!!!!!!!! u got all of us praying & rooting for ya!!!! :)
http://optn.transplant.hrsa.gov/policiesAndBylaws/policies.asp
Mal....I'm sure you may know all this but 9.3 in policys states the reason I don't get the exception points.
Also until yesterday night I wasn't sure how this procedure was done, I thought they were both done via trans cath but since then I've been educated by the Mrs. That it is percutaneous. However it sounds to me like even after doing this one, they feel pretty sure that there will be more on my next scans.
Is that pretty consistent with your experience?
Thanks
Duane
Duane, please keep us posted on the date. We'll be praying for you and your family. Sounds like you've already got the most important aspects covered.
I'm reminded of what a friend said, "and lo I am with you always, even unto the end of the world"
Hi Duane,
If you're having RFA, ignore my comments. I thought you were having Therasphere. All the best.
RFA sounds pretty awesome to me. It is minimally invasive and has an >85% success rate for completely eliminating small tumors. Here is some info:
http://www.radiologyinfo.org/en/info.cfm?pg=rfaliver
RFA, and it sounds like they are making a small incision or using a small needle and going in to the liver that way percutaneously, guided by C T and Ultrasound , it could be trans catheter? but the GA is to keep you completely still so they don't hit and puncture something else
I am having my wife ask the IR doc which method they are using....this all happened pretty fast and that is a question I should get an answer for so thanks for raising the thought.
Duane
The sliver lining in all this is that you have a wonderful wife as your advocate as well as an excellent team of doctors (and a supportive boss). Good luck with your decision, Duane. I am rooting and praying for you whichever choice you go with.
Hi Duane,
Good luck with the TACE. Not sure why you need a GA- it's just a catheter in the groin. I'd like to be awake and watch the monitor screen to make sure they've got the catheter in the correct artery.
I'm amazed by your story about tumour size, and the fact that 1.7cm is too small. Wow! Over here, for cirrhotics, we use the Milan Criteria which specifies the lesion must be <5cm, if single.
It's a great idea to get it ablated and hopefully you won't grow any more. Cheers buddy.
Almost forgot....I still have job and probably should go back to work until they at least get me scheduled, I honestly have not even thought about work since last Thursday.....and now I'll have this and of course pre op physical, and then I'll need time off after I'm sure so it's been pretty intrusive on work, but again I've been working at the same place for over 31 yrs and the family owners are as good as my med team, they have paid me and supported me all the way thru, so for all the bad luck I've had I have angels all around me.
Thanks be to God! And this forum
This does sound good, Duane. It sounds like the docs think your liver is doing relatively well, and it still could improve now that you are SVR, despite this new twist. I kind of like that they will be doing this procedure under general anesthesia. A nap for you and when you wake up it is done.
Yup, women on a mission are bad-asses. Those guys probably want to stay on her good side. lol
It has been a good day for you, all things considered, I hope. Have a good evening. :)
With liver function improved as the result of SVR and less occurrence of new lesions, then seems like it would make sense that spreading chances would also be reduced.
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LOL, I change my statement about looks like you have an excellent treatment team
to
Look like you have an excellent treatment team with an agenda, that agenda being 'staying out of trouble'
They doubling in 3-6 months is common but spreading is unknown it's different for everyone I guess.
Well, they already had their round table and just called me, and it has been determined that with the elimination of the Hep C we are going to treat now, as they feel I am too healthy for transplant at this point, so the best plan is to treat now and eliminate it, because improvement in liver function with clearing the Hep improves the chances of less lesions occurring. So all in all i'm happy with this plan because as bad as this liver is I've kinda become attached to it ;)...ok bad satire.
Anyway waiting on scheduling to call and give me a date they said in the next three weeks but if it's like everything else I wouldn't be surprised if it were early next week, I was told that all three docs are participating....I guess it helps when ur wife works IR at the hospital you are getting treated at.
I'm told it will be a CT/Ultrasound guided procedure under general anesthesia.
Like I said for all the bad news I'm lucky I get this kind of attention....either that or their scared of my wife
lol
Anyway that's all for this episode.
Duane
P.S. Duayne: Did the docs have any ideas on how long it might take to metastasize, what the odds are that it will spread, etc? That seems like a very important factor here.
Hi Duane:
I want a play by play. :) Seriously, this is very educational and if it was me I would want people who are in similar boats to discuss it with. As close as we might be to family members talking to them about this stuff just isn't the same.
This is very good that they now have done 3 imaging tests. I feel so much more comfortable with that than with just the single MRI. Now it is just making the decision on when to begin treatment. Either beginning immediately or waiting till it hits 2.0 are both reasonable choices, IMO. I like the idea of you getting a bump up on the transplant list but, otoh, I'd like to see this tumor get blasted immediately. Such a difficult decision but you will reach the right choice for you and things will work out.
I'm interested to hear what the docs have to say. Getting them to talk about it between themselves and try to come to an agreement was an excellent call.
I'll have to remember that one. Hang in there.
Wow Duane. I know your starving for facts to base your final decision on, and rightly so. I wish I was more knowledgeable and could be of help, but I'll have to replace knowledge with cheer leading at this point. It sounds like you have an excellent treatment team to support you so I'm following what you do closely and cheering for your success in overcoming this thing.
Not that everyone wants a play by play here but here it is anyway......
I had an US and then they decided to follow that right up with a CT w/contrast to have what they called a third data point to confirm that the MRI, US, and CT all showed the same thing, and a verification of the location because of size (small) so then the main IR doc said lets go ahead and set up the ablation, at that point I asked about the pros and cons of waiting for it to come to a size worthy of the exception points and was applauded for asking that question, he said that he said "lets treat it" because he can , but waiting until it was larger than 2.0 cm is perfectly acceptable as he was fine with using ablation up to 3cm without any problems, he also said if we treat now or later the likely hood of another or more lesions is very high in the next scans as once this starts happening in a cirrhotic liver as bad as mine is they tend to just keep coming.
So after digesting all that I asked them to all sit down and ask themselves if it were them what would they do? And if they can come to an agreement then we will go with that...I'm in no hurry to get transplanted so if killing off a bunch of small ones over time that doesn't decrease the quality of life any further that would be fine with me, but I don't want it to be a situation where my heath is compromised to the point that it would effect the outcome of a transplant and recovery then waiting and getting the points to do transplant sooner is preferable.
They will call me when they reach their conclusion, and if I change my mind either way I still get to make the ultimate decision.
So that's it for today's episode thanks for tuning in !
Hi Duane:
I am very happy that they will be doing an ultrasound today. While the original diagnosis was probably correct there is a small margin of error particularly with a tumor <2.0. There are various guidelines for diagnosing HCC and sometimes a second imaging is mandatory to confirm the diagnosis.
Treating this quickly is important, IMO, because the last thing you want is for it to metastasize. Having said that, assuming the accuracy of the doubling rule, this tumor should be at 2.0 in a very short period of time. I would wait till it hits 2.0 and then treat it aggressively. That approach not only allows you to confirm that this is indeed a malignant tumor but also bumps you up on the transplant list. I would talk to my doc about this approach, possibly imaging it again in a few weeks, and if it is at 2.0 begin tx. You may get extremely lucky and have it turn out to be benign, but more likely, you will need to treat to try to keep it in check while you wait for the transplant.
Of course you need to follow your docs recommendations, but assuming you have some decisions to make, this is the way I would go based on what I know (which admittedly is not much).
Btw, I came across a really good article, written by the American Cancer Society, that discusses liver cancer in very accessible terms. It is about 50 pages but well worth the read for anyone who is interested. http://www.cancer.org/acs/groups/cid/documents/webcontent/003114-pdf.pdf
-- Edited by Isiscat2011 on Tuesday 9th of September 2014 06:33:33 PM
Thank you all for posting, and Malcom I wanted your input so that's not hijacking, I think the deal now is do they want to get me the exception points? As I said before 1.7 cm doesn't, but 2.0 cm does, then they can Ablate it or whatever, the likely hood of reoccurence is rather high the way I understand it, so if I keep treating small lesions unless my liver fails I'm gonna be hanging rather low on the transplant list where as If I wait until 2.0 I shoot up to 22 MELD and get the 3 points every month or 3 months? (Whatever that time frame is) which would likely get me transplanted in a yr. But then there is the spread issue and I assume that would matter where the lesion is located as I would think areas closer to higher blood flow would be more likely to spread (metastasize ) never black and white choices.....always a touch of gray.
Anyway apparently I gotta go back cause the IR guys want to ultrasound me today just waiting to hear what time.
Duane,The reason I keep posting on this thread is to give you hope for a good outcome. My 1.5 lesion was given LRAD 4 rating (5 being definitely malignant) with 3 consecutive MRIs, and I was being evaluated for liver transplant, with discussions about doing TACE if the lesion started growing. I was being monitored every 3 months. The first week in June, halfway through treatment with Sovaldi/Olysio with my liver inflammation diminished, the MRI indicated no suspicious signals. I really thought it was a mistake because by that time I had resigned myself to a worse case scenario of cancer and transplant. Last week I had another MRI confirming the June result.
I still have to be monitored every 3 months for the next 2 years, but for now I'm accepting the "benign" diagnoses, and they've stopped the liver transplant evaluation process.
So please keep in mind there is hope!
Just to qualify 'The vascular pattern distinguishes it from benign lesions'.
This assumes the examination is done on a modern MRI machine, with appropriate pre-contrast scans, and the proper sequences after intravenous liver-specific contrast. Lesions smaller than 2 cms may be tricky, but ~90% of HCC's should be correctly diagnosed. Sometimes, a dysplastic nodule may give a similar appearance. These lesions should be called 'suspicious' rather than 'indeterminate', and a followup study in 3 months should be advised. Fortunately, with the modern machines, FNA (Fine Needle Aspiration) should not be necessary. There is a risk of 'seeding' tumour cells with this.
Some Radiologists think contrast-enhanced CT is as good as MRI. I don't. Sorry to hijack your thread, Duane.