Dr. report- Early Cirrhosis!! Yikes!

I received a report from CPMC for the second opinion I got in Dec. I just read it, I have been in hiatus from thinking about this stuff, too depressing.  I am a bit distressed by the wording and concerned, of course. I have another consult/possible new dr. appt. on 1/29.

ASSESSMENT: A 55 y/o female with chroice hep C and minial fibrosis based on liver biopsy from six years ago and a suggestion of minimal fibrosis based on a Fibroscan report in LA. However, on physical examination, she does have evidence of hepatomegaly, with a firm liver, and she had borderline thrombocytopenia, making me suspicious that she has indeed progressed to advanced fibrosis. She is currently doing exceptional well on combo therapy according to SOC. My only concern would be for her potential risk of relapse should whe indeed be a slow responder. Upon further review of her viral load testing, the VL from apox. 10 weeks suggests that her virus was detectable, however, not quantifiable, giving a range between 75 IU/ml and 200 IU/ml.  On followup testing 9/11, week 20, she did have have UND. (Please note some abvre

[sfbaygirl]

[willows]

Yikes!  You have been given a lot to process, take a breath, it will be okay.  Even if it doesn't feel like it right now.  First, I think it was a good choice for your doctor to give you the extra weeks, as hard as those weeks might be to think about, it's pretty much a proven fact that the IFN will give your liver time to heal.  So the cirhossis may not be a factor at the end of tx.  

We had a person post here who went thru a lot of tx and after a biopsy, he had regressed TWO stages, so I'm a big believer in IFN as medicine to help liver heal.  In a way, you are getting maintenance, wrapped in a darn good chance for SVR.  

The extra weeks must be such burden to think about, the only thing that ever helped me was remembering that I am not a victim, that I MAKE the decisions about my treatment.  You can do the same, after the initial terror and frustration abate a little and remember there are so many of us here, you can get just about any info you need.  

Sounds like you started out in okay shape, are staying in okay shape during SOC, you'll end tx in great shape, well, minus a little hair maybe.  All I can tell you is that I focused on IFN healing my liver and it got me thru the very rough spots of tx.  Hope you can find some comfort too.

Willow

[HCA]

Im in a similar position.I'm male-57 next month.
My doctor refers to 'advanced fibrosis',but it is understood between us that I have compensated cirrhosis.
It's at our age that cirrhosis tends to become a reality.
Calm down!
It would appear you are responding to Tx and have a fighting chance of clearance.Obviously go for the extension.
I believe that current thinking is that early cirrhosis may be reversed.
I also believe that upto 70% of stage 1 cirrhotics on the Child-Pugh score may go for upto ten years without clinical complications.
The first manifestation of de-compensation is usually HCC,BUT,careful monitoring catches it when it is treatable and removable even it does occurr.I believe the odds are about 30% over ten years that it may occurr.
If your current treatment succeeds then your odds improve dramatically.
There is also maintainance therapy to hold the position if you don't clear this time.The first new anti- viral inhibitors will be availible I think in 2009.
It is a blow when the cirrhosis word is introduced,and there are some stage three patients on this forum who tend to distance themselves from cirrhosis,although I believe that stage 3 to 4 progression is typically just eighteen months.
I am not a doctor,or a pretend doctor,but from the info you have presented I believe you will beat your hepatitis C and live a full life.

[FlGuy]

Just a couple of things.  As already stated, tx-to date maybe has benefited the liver condition. And, the thrombo (low plates) - was that from lab during tx, or at baseline?  If during tx, it's not so unexpected.  Give you a platlete number?  Good luck in processing all this stuff.  From my expereince, 'early cirrhosis' can have a beneficial effect on your motivation. Kind of 'damn the torpedoes, full speed ahead' thought.

[jmjm530]

First, like to say that I'm sorry your second opinion report isn't all that we would have liked.

Of course, one thing to note is that it's an "opinion" without biopsy to be balanced against a recent Fibroscan that I believed showed significantly less liver damage. Maybe HR will comment on how this may be possible and if the tx drugs themselves could have effected either dx.

As to treatment length, assuming significant fibrosis (stage 3), tx length should be the same as if you had less damage, according to a recent study and several doctors I consulted with. Stage 4 may require longer tx but they didn't way you were a stage 4, as "early cirrhosis" I believe is still a stage 3.

On the other hand, it appears you are a slower repsonder, assuming your vl test was interpreted accuratly. I do remember some controversy on the results, and if it were me, I'd definitely get to the bottom of that before proceeding. Either you were detectible at week 10 or not. You should find out definitely.

But assuming you were detectible, the question is how long do you treat. Berg and Tapias suggest better results for 72 weeks (vs 48) for those detectible at week 12 but non-detectible at week 24. However, Berg and Tapias based their studies on flat dosed ribavrin, not weight-based as I assume you are on. Also, even if you were detectible at week 10, it's unclear if you cleared or not by week 12 because you didn't test again until week 20. Given your low VL at week 10, it's reasonable you were non-detectible two weeks later.

So, throwing all this in a pot, your consult's conclusion that "you're somewhat at an increased risk of relapse" seems reasonable as well as his suggestion to extend to 60 weeks. There is no magic number, be it 60 or 72 in your case, so it really comes down to a judgement call. My doc, for example, decided to add 48 week to the time I became non-detectible which was a consertative take on the Drusano model. If you added 48 weeks -- assuming you probably became non-detectible somewhere around week 12, then that also adds up to around 60 weeks. That said, he just as reasonably could have concluded 72 weeks but he didn't.

How much confidence do you have in this particular consult's clinical judgement? If you have a lot of confidence, to me that would be the most important factor in deciding how long to extend.

All the best,

-- Jim

[dyce]

Baygirl, I ditto willow and hca, you are txing , so you have a good chance of backing this viurus' course of action up! Besides, you are at a chance of clearing.

Sorry you have to go thru all this worry . Take a deep breath and concentrate on good days ahead,

Your going to be FINE!!

[HCA]

I have checked the Metavir definitions-I assume we are not involving Ishak-and stage 3 is bridging and the word cirrhosis does not appear until the definition of stage 4.
I infer that 'early cirrhosis' is F4.
A somewhat pedantic point I know ,but I don't know that there is much to be gained by diluting the implications of the scoring system.
You may be able to find another staging description that contradicts my point,but I believe I have sourced it correctly.

[mkeela]

Oh boy, what do ya say to all that!!?? Just take it easy and don't upset yourself to much sweety. I can't even conceive of having a report like that upon all the other stress in your life right now. The rest of the gang has given you alot of advice...take it and run! Prayers and Blessings to you, Mequila.

[jmjm530]

I wasn't aware that "EARLY cirrhosis" had a number attached to it -- always thought it was an imprecise phrase that some doctors used to describe advanced stage 3.  However, an examination of her consult's wording "his given her high VL and my lingering suspicion for advanced fibrosis with possible early cirrhosis" seems to support your point that he's equating "early cirrhosis" with stage 4, although still not sure if that's a universally accepted definition.

In an event, in lieu of biopsy and a conflicting Fibroscan report, he qualifies both terms using "LINGERING SUSPICION for advanced fibrosis" "and POSSIBLE early cirrhosis." The lean appears to be on advanced fibrosis or stage 3.

But thanks for the careful reading, because indeed he is suggesting there is a POSSIBLITY of her being  in the early part of stage 4.

All the best,

-- Jim

[jmjm530]

OK. Get this. And all with the SAME biopsy.

Report reads 3/4. I ask the doctor what it means and he tells me I'm between stage 3 and 4. So I decide to treat. Took me 3 years to treat but I decided to tx based on that report. LOL.

OK. I start treating and learning about HCV all at the same time. Within a couple of days I realized that stage 3/4 did not mean I was between stage 3 and 4 but stage 3 out of 4. OK.

Then about week 2 in tx I brought slides to a well-known consultant. His pathologist graded my stage 3/4 as a stage 2. OK.

Then I bring same slides to my current treating hepatologist. He grades same slides as somewhere between stage 2 and 3. OK.

The I bring same slides to Fibroscan trial and their pathologist stages me back at stage 3. OK. Fibroscan, however puts me closer to stage 2. OK.

Truth is, my original biopsy report read "stage 2" -- or even between stage 2 and 3 -- as suggested by two pathologists -- I probably never would have treated to this day although probably would have had a needle biopsy around now.

I don't think about this a lot but when I do it pisses me off because treatment was something I intentionally put off until the very last moment and now it turns out I may have had time.

-- Jim

[copyman]

sorry sfbaygirl for this latest news. i know it must be devastating. didnt HR do the scan for kalio and you? wait and see what he has to say. i think he was the best qualified to do the test but once again it is not 100%. maybe get some other tests like the fibrosure or even a bx. i have heard a good hepatologist can indeed tell by labs & physical exam a persons stage fairly accurately. hopefully this time he was wrong. i would tend to believe HR's scan if it was me.

[Forseegood]

yeah Jim, well, it might be playing out that way, though I'm just going step by step (is that ambiguous enough for you?) anyway, after reading the entirity of this thread, I tend to think that this fibroscan thing is really a pretty good method of diagnosing, as it images the entire liver and not just certain aspects of it like a needle biopsy...

Also, the disease seems to "play out" differently on patient to patient, where some patients seem to have more of a uniform fibrotic manifestation throughout the entire liver, and others have a lot of fibrosis on only certain parts of the liver, and the rest of their liver is almost virgin (heard this from some very good sources)...this latter type of patient would probably have much more variation on a biopsy diagnosis then the former...

I know next to nothing, admittedly, and not to start any controversy....just my very humble opinion, but I've just heard so many "varying takes on the same biopsy" stories by so many patients' doctors it's not funny...

[jmjm530]

Just read your first post on adv fibrosis vs cirrhosis, HCC, etc. Hopefully my comments will be seen as something postive for discussion and not a contradiction to what you have heard.

My last biopsy was actually 3 years prior to starting treatment. The report said stage 3 out of 4 stages. I sat down to review the report with a doctor who has done fibrosis specific research as opposed to simply clinical work with HCV. His take was that I would eventually progress to stage 4 without treatment but it may take up to ten years and did not think anything would happen within let's say a year or even two. This was confirmed by another researcher in the field who I confided on the phone that my stage 3 biopsy was 3 years old. While I half expected him to use the "C" word, he said there probably hasn't been much change in 3 years.

I do understand that this is in contradiction to what you (and others) have said regarding the 18 month thing, but he seemed to hold his ground when questioned on that. And while he doesn't dismiss HCC (wants me to have periodic ultrasound, etc for life) the 30 per cent figure you mentioned seems much, much too high based on my conversations with him. Indeed, there may be some crossover discussion among hepatologists between stage 3 and 4, but I believe the studies use more clear cut models where bridging fibrosis is stage 3 and cirrhosis is beyond that.

All the best,

-- Jim

[Forseegood]

I'd just like to ditto what Jim said, this is one guy's opinion...I think it's odd that I'll see some patients come on here (or somewhere else) and there seems to be such a variation in conclusions or speculative guessing from many patient's doctor(s)...I don't always see that a patient says that all their doctors and analysts completely agree on everything point by point, unless they are in advanced cirrhosis or something more cut and dry...this is just my take away from having been around for awhile...

I've seen all kinds of things, like a patient say they were biopsid at a stage 3 initially, then two years later biopsied at a stage 2 (without having taken treatment in the interim.) Did the patient actually get better in the two year interim without the benefit of treatment? Or was there different data in the biopsing process? or different interpretations? I've seen other things like this as well...some doctors seem to give more conservative interpretations of the exact same data then other doctors....there can be lots of variables in diagnosing liver conditions one would think...I've read in order to get a really great reading from a biopsy, they'd have to take a lot more needle samples of the liver, which isn't viable with that particular methodology.....

I know it's probably hard to get this into perspective, (I'm a much bigger alarmist than you are I'm sure, so I need to take this advice more then anybody) God knows, but try to remember there were many people out there way worse off then you are now that are looking back on this as SVRed, many with reversal of fibrosis, (it's hard to get hard and fast data on this stuff)...this is only my puny opinion based on reading a lot of patient-to-patient data and some studies, articles, etc....be well

[mikesimon]

My advice is simple: If you are tolerating TX then extend and take your best shot at SVR. There is nothing else you can do as I see it except worry and, though I worry all the time about everything, it hasn't helped me one iota - except that I may have learned a little. Good luck. Mike

[jmjm530]

Excellent take on the situation. Personally, I always prefer the docs who don't ring the alarm bells unless the place is burning down :)

BTW what's with your recent question regarding a new study? Are you really considering treating now? I don't believe it :) Why don't you just pull up a chair and wait for the Vertex results to roll in like very soon.

Be well,

-- Jim

[HCA]

Jim,
Thx your response.
Get a load of this!
My first bx in 2000 was stage 2.
The next one 9 months later was stage 1 ('I have good news for you ' said my then doctor)
A third bx in 2003 came back as stage 3 bridging.
All scored Ishak apparently.
Feeling a little alarmed I tracked down and called the pathologist who did the third report.
He dug out the slides and called me back (this guy had a good reputation).
He said that the second bx (stage 1 )was 'an undercall' as was the first one showing stage 2,and that I was and had been
an Ishak 3 throughout!!!!!!!!!!!
My current doctor wont do another bx 'Won't change anything'
The eighteen month average duration of Metavir 3 I gleaned from Dr. Dietrich the well known specialist on the HIV and Hepatitis site.
Us 'surfing experts' are full of dogma,and the so called pros aren't much better!!!!!!!!!!!!!

[sfbaygirl]

I was/am really wondering and distressed by the lack of consistancy with tests and reports. I did speak with HR, we were both very upset that a test that happened at week 10 (reported by my dr. as UND and was not) is having this effect on me now. I have no way of going back and retesting my 10 week PCR to be sure. This is why HR, jim and many of us repeatedly say GET PCR's early!! How do we know without them? Possibly I could have been UND at 12 weeks, but I will never know now at 39 weeks. I really sux that because of incompetence at the lab, I have to extend and go through this stuff that much longer, when a simple test could have shown how I was progressing on tx long ago. Perhaps I wouldn't have to continue this poison for another 6 months, or 3 months...of course this all depends on my ins. co. YUCK.

Okay, I can handle this, I suppose, but I am angry and if I had known more at the beginning of tx, perhaps this wouldn't be happening now.

These days I tell everyone I bite heads off and then suck out the blood, hopefully this doesnt' get worse! My marriage is already stretched to the limit on tx.

I am strong, I will get through this and I am so grateful for all of you that posted to me. I want to cry but I am thinking that with all this uncertainty, I need to think of the glass that is half full, not half empty....

Thanks for the replies!  Interesting to think that all of these reports etc. can be all wrong! How do we go from stage 1 to stage 4 in a matter of one dr?

[orphanedhawk]

By the time I was diagnosed with Hep C I already had cirrhosis.  I was happily bouncing around without a clue. Now, I can look back and see the signs. My point is, cirrhosis is not the death sentence some think it is. My husband's uncle had it for over 20 years while drinking like a fish.  If you clear the Hep, then your liver can heal itself. You have good care. Don't let this word scare you. You are still who you were yesterday.

[Pdilly]

Gosh girl....hang in there now.   She did say that was her opinion but I don't see where there was a new bx or any other tests to back it up.   I had red palms that cleared up immediatly when started tx.  I thought this whole time it was because I was throwing my pots.  Clay can be rough so that was my excuse.  All you can do is battle it with all the gusto you can muster.   I really wish a cure would be in sight.
Take care and prayers are comming your way.
Pat

[jmjm530]

Thanks Elaine. At this point it looks pretty definite that I will stay undetected even though I know I will be anxious when my 1 year post tx viral load fax arrives.  I saw your post above about your son's post tx symptons and really don't have any answers. Hopefully a good liver specialist will know better but as discussed, they don't have all the answers either. Let's pray the newer drugs will pan out and help everyone who needs them.

Be well,

-- Jim

[chcnme]

I'm so sorry you've been given this news and scare.  I was wondering where you had been and was getting kind of worried about you.  I hardly know what to say except I'm glad to see you have posted and that I can surely understand how news like that could be so very scary and make you feel like sh**.  Try your best to remember what else he said, though,  and that is  "she is currently doing exceptionally well on combo therapy".  As far as extending?  Yeah... I think it would be to your benefit  (from all I've been reading on slow response, etc.)   Take this one week at a time and keep your chin up!  Wishing you the best, SFbaygirl!

[Hepatitis Researcher]

At this point the only actual findings on which the report was based were the palpation of the liver and the platelets.

Her fibroscan was consistent with stage 2 at worst stage 3 fibrosis ( There is an overlap of these result fields, as you expect). The slides were consistent and all of good quality. There is little question re the stiffness of her liver.
It is possible that this is a slow regression ( by IFN therapy) from a stage 3 or 4 causing the liver margin ( that is what you palpate/ feel) to feel stiffer than the main parenchyma of the liver ( that is what the scan assesses). It is important to see that  he just stated a clinical suspicion. There are other aspects here: He noted the uncertainty on the week 10 Vl that the contradiction on the lab reported generated and felt that it was besser to err on the safe side. If we suspect the liver in a worse condition, the extension is more warranted. The key is to optimize treatment towards likelihood of success.

This situation occurs in variations  all the times: Uncertainty about biopsies, scans, palpations, the meaning of spleen/liver enlargements, platelet counts (we just recently has this discussion her).
Even a decent degree of certainty in medicine is hard to come by. Thats why I like to collect all relevant tests and see how they fit the history and bigger picture. In her case a fibrosure might have been a nice addition to the picture. If that would fit the scan and we have a normal spleen size, then we feel beter about the overall state of liver damage.
Also that distinct line between stage 3 fibrosis and cirrhosis is a constant source of confusion. There is of course a continuum and there is also inhomogeneity within the liver. And there is also a huge difference between early and advanced cirrhosis, much more than most here are aware of.

So we need early, several extremely sensitive PCRs, combined assessment of liver fibrosis ideally by biopsy, multipole scan and fibrotests and portal hypertension assessment by spleen size and endoscopy and ultrasound signs of portal hypertension, like portal vein diameter, decreased Doppler flow. And all that on the background of history, age, and BTW a genetic cirrhosis risk score would also weigh in our picture. Sounds expensive? It is.

[willows]

the option to the expensive,comprehensive information that all people with chronic disease deserve?  fumbling around in the dark, sharing research with other sick folks, hearing contradictory info from the medical field, living with inconsistent tests and an appalling lack of public information.

No wonder I am tied in knots at times.  Just couldn't tell you if it was a stage 2/complicated knot, stage 3/early knot, stage 4/tied too tight knot.  

I hate this virus.

Willows

[compulsive]

I was wondering how you were.  MAN I am sorry to hear the confusing and not great news.  All I can tell you is that my Dr. is confident that treatment can, and often does reverse early damage.  But - from reading here, on line, and seeing two others guys - there are a lot of different "takes" on this out there.  All I can say - is find a Dr. you trust, make a plan you both like and then go for it.
Hang in there - and vent when you need to.

willow - yep this whole ride can be true torture.  I just HATE seeing what it does sometimes to people and their lives.

[ladybug52]

Good to see you back in action on the internet! What a lot of information from all involved. Shows how much people think of you around here!
I like Mike Simon's advice: just tx and try not to worry. Also HR's assessment sounded a lot more positive than the biopsy report!
I think the worst side effect is the stress this illness brings to our lives. Sometimes I hate to be alone with my thoughts because I just give in to worrying.
You have had a rough time. Was your surgery prior or during tx? (gallbladder I think)
I think you have a great attitude, you're always helping others and just hang in there. Keep busy in the kitchen when you have the energy! Start learning Spanish as a second language! just keep your mind away from the fear of the unknown. (Easy for me to say to others!) Try this one...just do it! :)
Janice

[pln]

My DR told me I am stage 3 and if I do not treat now in 10 years I would  have Cirrhosis. So I know stage 3 is not Cirrhosis because I just did a study and you can not have Cirrhosis to do the study I was in.  My DR also told me that if I clear my liver will heal its self. Pam

[sfbaygirl]

Thanks, I need this place more than it needs me, that's for sure. I think not being around has had a negative effect on my tx. I feel so much more involved in my tx when I am here. Yes, I have been cooking and thinking about Spanish in Guatemala in the summer, if that bratty teen comes back here again! The stress from her could kill a cockroach! Spanish in Guatemala sounds like a good thing...if I am off tx by then. John has been urging me to go online for a week now, usually he is complaining I'm on to much. LOL.

I'm thinking about some of those "helper" antivirals about now....Can you believe I am on week 39 (I think, maybe 40)? It does  seem to go by quickly even though I have had most of the sx listed in the questionaire by the dr. They do come and go and it does end, eventually!

I can do this, I think I can, I think I can....

[MissMiss]

I know you can!  I know you can!

Still digesting all of the above.  We're all rooting for you.

miss

[aiuta]

Welcome back.  We missed you.  I don't have enough experience in this area to give you sound medical advice, but I did have to recently make a decision about extending- it was not an easy one to make.  I wish you all the best with YOUR decision and we're here to support you along the way.  Good luck.  All my best, Aiuta

[sfbaygirl]

Jumping in on the biopsy/fibroscan discussion...As HR and I discussed yesterday, my fibroscan was fairly even throughout. Good numbers, although some were a few pts higher than others. HR said well you could have 10 biopsies, as a biopsy only shows one place. I think the fibroscan is an excellent tool. Mine looked good...stage 1 or 2, but the fibrosis level on my biopsy 6 years ago showed grade 4. I am not sure how you can have early cirrhosis and a stage 1?

As far as this report goes, we are speculating that the Dr. is trying to convince my Dr. that I need to extend, therefore the more aggressive tone. Also it could be needed for ins. This also could be a cover your bases too. It was Dr. F's suspusion, not a fact. I am seeing another dr. on 1.29. HR thought I shouldn't send him the report first to see what he thinks, I already faxed it to him though. I do think it takes a lot to get these ins. co to move away from SOC and give us extentions if we need them. Most of the time, as we know they don't want to pay for extentions.

[Cindy10]

You can do this!! Just wanted you to know I was thinking about you.  

[friole]

I don't know about the suspected Cirhhosis - I am glad you have some contact with HR who is better at understanding the results.  I believe it is clear that you were not UND at 10 weeks.  That alone would make me want you to extend.  

How are you faring physically and mentally.  Could you go the 72?  If you can, I would.
frijole

[sfbaygirl]

Thanks for all the warm thoughts!

Frioje;
I have been feeling pretty good lately, actually have been cooking dinners and doing a bit of gardening. I have too or that rebellous teen would send me over the edge. I could do 72 weeks, I think, if the dr's would approve it. Not sure the teen would still be alive, but I would! LOL John doesn't want me to. He thinks 60 is enough. I know your story and I think and talk to the dr's about you all the time.

[friole]

I smile about the teen.  What was it Mark Twain said ?  You should put all children in a barrel with a hole in it and when they reach puberty plug the hole...   As far as the hubby's opinion, I know mine would have liked me not to treat and he will not like me to treat again, but I will if I think it will help.

My story -- I don't know.  It is not safe to say that longer time would have helped (altho I wish I did the 72).  I know my body well enough to know I have a lot of tolerance to medicines, pain, stomach prolems, etc.  That is to say, the things that affect others do not affect me.  So it is quite possible I need to double up on the Peg up front to get the needed effect.

[sfbaygirl]

I knew a high school principal that used to say that middle school kids should all be rounded up, put on a bus and let off when they reach high school age. Sounds about right, except this one is in high school! Luckily, in Utah. John says I need to bone up on my spanish, so I volenteered to disappear to Guatemala this summer when she's home to hone my Spanish...he doesn't think I get through to the housekeeper! Be careful of what you ask for.

Perhaps the double dosing would have been good for me too. I have a high tolerence for drugs too. Lately, I am wondering if the tx meds are even working. I don't get the sx I was before. Today I am starting to feel my shot from yesterday, but only feel a little yucky. I think I am going to add that oxymatrine to the mix. I find that this cookie cutter approach to tx is so wrong. It's all based on the trials that got the drugs approved and it's a **** shoot at that. What if the orginal tx trial (Inf/Riba) had been double dose at first, 4 week PCR's, dosing every day instead of Peg, as SOC? Perhaps the numbers wouldn't be 50% SVR, but 80% SVR. But because of the orginal trial data, this is what was approved. Now it is set in stone, when people just aren't the same!!!