Hep C Discussion Forum

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.  :)

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

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.  

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

We're praying for you Duane.  Hope all goes well.

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

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

Dzdayscomin wrote:

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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!

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 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.

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.

u are in my prayers. good results are coming. keep the faith!!

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.  

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. 

prayers to u!! I feel u will be just fine.. keep that faith buddy!!!!!!!!!!!! u got all of us praying & rooting for ya!!!! :)

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" 

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

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

Dzdayscomin wrote:

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 but spreading is unknown it's different for everyone I guess.

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 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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         ...either that or their scared of my wife  lol

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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'

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

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.  

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 !

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.