Liver Biopsy

HOLY CR@P WHO STOLE MY LIVER?

Well, those weren’t the exact words I issued when I picked up my  biopsy report today, -- I think I actually said more calmly, “This is not what I was expecting”-- but it sure was what I was thinking.

A little history ---
First biopsy – I have had Hep C minimally for 34 years, but probably for 40 years.  2005 biopsy showed Grade 1, Stage 1-2 (early periportal fibrosis, no piecemeal necrosis)   I treated for 56 weeks in ’05-’06.  I responded well but still had 40 IU/mL viral load at 12 weeks and was clear by a sensitive test at 20 weeks.  Relapsed

Second biopsy – 2007 – after relapse – showed grade 1, stage 1-2

Third biopsy last Friday --   Grade 3-4, Stage 3-4  , plus Moderate to severe steatosis (never had that before) and  “moderate to severe inflammatory infiltrate with portal tracts with significant piecemeal necrosis and lobular inflammation.  Bridging fibrosis.  “… findings are consistent with a chronic viral hepatitis with cirrhosis.”

There it was – the “c” word – cirrhosis.   I never saw this coming.

I have been on this board quite awhile and am very familiar with the fact that liver progress is non-linear.  It does not progress at the same rate – it may deteriorate at a fast rate,  all of the sudden.  But, when it happens to you…… it is another story.  So, folks, let’s not rely on those old biopsies.  Remember, we feel good until we don’t…

So, there is no question about it.  I will be treating soon.  I  consult with the hepatologist on August 5, get the meds ordered and should be on my way soon.  I spoke with the PA in Dallas and they have not received the report yet.  They need to give orders to have the slides sent to Dallas for the pathologist there to read. All this needs to get done before my appointment.  I am writing the doctor a letter so he can get the meds ordered now instead of waiting.

So to all my crazy and not so crazy friends here, I will be joining you soon and surwly will need your support.

frijole - bean

[jsf52]

Hi, Sorry to hear about the biopsy report.  I recently went from Stage 2 to Stage 3 and know the scariness of having this dragon progress.  Good luck with treatment.  We will be there with you.

jsf52

[nygirl7]

Oh K I dont know what to say........you have been one of the most supportive and helpful people I have known here and I for once dont know what to say.

Except this time you WILL get down to UND and stay there (bless us with our 40s LOL) I have no doubt, I will think it to be and therefore it is.

I'm so sorry about this news.........so damn sorry my good friend.

[fullmoon1]

Sorry to hear the bad news!  We will be here for you....

[willing]

wow... OK, first look on the bright side. Much better to get this news now than say a year ago when it would not have been clear what to do. Now it's obvious. Never mind the risk of the 2am  Klondike bars, full steam ahead.

Then the quibbling: "bridging fibrosis" is not cirrhosis. The latter is almost universally accompanied by other markers : platelets, INR, portal vein and spleen diameter, etc. etc. Worth checking all indicators. And more quibbling : whenever these quick jumps in stage, good or bad, come up following up with a FS seems wise. More noise but much less local sampling bias (does the report mention sample length  and how many portal tracts were visible?). Nevertheless, all details. Good luck picking your PI on the 5th,

[willbb]

Hi...certainly not the biopsy report you must have been hoping for, however not at all too late to have a succesful outcome given the new meds. Good luck with treating with whatever you and your doctor choose,we will be rooting for you.

Will

[Kathy73]

You have whatever support I can give you.

All my best to you,
Kathy

[coeric]

sorry about your recent report.

platelets were my first casualty of cirrhosis.  i am now around 100,000.  you did not mention nodule formation which i believe is used to diagnosis cirrhosis.  my recent report states"architectural distortion with compete and incomplete nodule formation." did the the pathologist state how many portal areas were evaluated?  i've read it takes at least 10 to assign a stage. i will be interested in how the pathologist in Dallas interprets the slide.

blessings,
eric

[orphanedhawk]

I'm so sorry to hear this.
May you soon be hep C free.
My only advice is to drink lots of coffee and try to keep your sense of humor.

Good luck,
OH

[susan400]

I'm sorry to hear about your biopsy report.  I don't know if you remembered but 2 of my 5 biopsies showed bridging fibrosis.  Then, on the one that I had last June, it showed no bridging fibrosis and that actually it looked like I'd had some improvement.  Mind, I still haven't cleared the Hep.  But, I had the two 5 weeks clinical trial treatments, one year apart, between biopsy #4 which showed bridging and biopsy #5, which showed no bridging.  Recently, I had a fibroscan which went along with the biopsy #5, more so than one with bridging.  So, I think that any time we do treatments that it helps the liver.  Try to keep up with your normal positive attitude that I hear in your posts and I think you'll do great!   Susan400

[flcyclist]

From one crazy to another, so sorry to hear about the progression, but hope this round with triple trt with be successful.  

Keep us informed.  Wishing you all the best.  

[charm27]

We are all here to support you...Youve been a great a great addition to the forum.

Wish you well and I know you will terminate the dragon!!

Charm

[Bill1954]

Ah gosh, Kathy—

I haven’t been checking in often in here lately, and almost overlooked this. So sorry to hear about the new developments; as Willing said, at least your path is clearly defined now.

I’ll drop you a quick note and check in further. Good luck, old friend-

--Bill

[coeric]

Dear One  - here is a brief article with a diagram that helped me understand my report.

http://www.aaimedicine.org/journal-of-insurance-medicine/jim/2001/033-01-0109.pdf

eric

[his3707]

With the new meds, You[ll make it this time!  Also in time to reverse some damage!  We'll be here for you!  You can count on it!    

[researchmonkey326]

It is hard to know what to say but I am sorry for your news.  Knowledge is power though so now it is time to move forward.
Debra

[SusieS2010]

The good news is that you are a relapser with a more than excellent chance to clear forever with the new drugs. I think cases like yours really show how significant the sampling errors are on  biopsies. Let us know how your appointment goes.

[ejoli]

          Oh I am sorry to hear about your biopsy. I'm glad that you know now.  Definitely going to do tx now. I'm happy that you can get the new drugs.  You'll make it!   -Libby  

[HectorSF]

Frijole, I am very sorry to hear about the results of your biopsy.

One thing I don't understand personally is "Bridging fibrosis.  “… findings are consistent with a chronic viral hepatitis with cirrhosis.”. Bridging fibrosis from my limited I thought was Metavir Stage 3. I didn't see any mention of distorted architecture and scarring in the report. As coeric also pointed out.

Low platelet count is usually the first indication of cirrhosis. Usually, about one-third of the body's platelets are held in the spleen. When the spleen swells (splenomegaly) due to the back up of blood flow through the scared liver, the spleen will hold on to too many platelets. This means that not enough platelets will circulate in the blood. "thrombocytopenia"

If your liver is now stage 4 it is still early and you are compensated to you still have time on your side. You can remain compensated for many years. The damage to your liver should be able to reversed if you can clear the virus. So it is great that you have the new DAAs available to you. They will give you the best odds there have ever been to cure your chronic hep C. Have you had the IL28B test? You may want to think about it, because it will give you insight into your odds. Of course it is a very personal decision as not every one wants to know.

But you are taking the correct action. Treatment ASAP.
I'm pulling for you. With all your knowledge you should be an ideal patient as far as compliance and caring for your liver. So all that is a big plus too.

Hang in there. You are on track and doing the best thing possible.

Cheers my friend!
Hector

------------------------------------------------------------------------------------------------------------------------
Medscape
The Liver Biopsy in Chronic Hepatitis C: Fibrosis and Fibrotic Progression
http://www.medscape.com/viewarticle/501268_4

"...The next major transition occurs with the development of fibrosis that bridges between vascular structures. There is general agreement that portal-portal bridging fibrosis precedes portal-central bridging, although instances of the latter can be seen early in the process. Gradually, more and more bridges form, accompanied by distortion of architecture due to hepatocellular regeneration and contraction of fibrotic scars.
When these changes diffusely involve the biopsy, it is classified as cirrhosis. It should be noted that these staging systems were developed for chronic viral and autoimmune hepatitis; although they can be used for chronic cholestatic liver diseases such as primary biliary cirrhosis, they are inadequate for staging steatohepatitis, given that none of them account for the zone 3 perisinusoidal fibrosis that is usually the earliest evidence of scarring."

"the extent of fibrosis clearly has an impact on moderating the rate of response to interferon-based therapies in chronic hepatitis C. This is evident not only in the fact that the response rates are lower in patients who have established cirrhosis as compared with those with precirrhotic fibrosis, but also that the response rates are lower in those with severe fibrosis (bridging or worse) as compared with those with mild fibrosis."
----------------------------------------------------------------------------------------------------------------------------

[Mary4now]

So sorry to hear about the results with your liver, but as noted you still have time and the new drugs will hopefully increase your odds for clearing.
I wish you the best of luck and medicine and good luck.
Mary

[James10500]

Sorry to hear this, best of luck with tx this time. New drugs equal new success !

[fretboard]

Whoa, that sux big time, sorry to hear about your bad news.  I have a feeling things are gonna go well for you and you will SVR this time.  Heck with the new drugs, your knowledge and friends here on this forum.  I think you're gonna do well.  good luck and God Bless!

[elpasolady]

Sorry for your news, but you have the best attitude to go forward.  We are all in this togerther.  All for one, and one for all, ( as the saying goes)
You will beat this this time!!!!
Blessings to you!
~Debbie~

[lapis]

Thanks for sharing your story.  As you said, it's a reminder to us all that liver disease progression is non-linear and things can change just as they did for you.  It is good that you have a plan and you're ready to move forward.  I'll be just another forum member, cheering for you!
Lapis

[Gracie_Lue]

Man I totaly know what that feals like. I too was not expecting the results I got form my biopsy. I am stage 3. So sorry to hear your bad news I wish you luck on your tx. I will be praying for you!

[screaming48]

I hate that your results turned out to be disappointing, but like everyone has said new drugs are here! Just need to pick the one you want to use (ugh), will be wishing the very very best for you this time around and many of us will be going with you as well. elpasolady is right, one for all and all for one! Praying for us all..

[Trish77]

Well.  That's a sobering biopsy result.  Just the same, as willing said, now you know exactly what you need to do and I know you'll get on with it.  You can reverse some of this and you're finding out before the prognosis is much worse.  Heigh-ho, Silver, eh?  I have great hopes for you, Frijole - you are very knowledgeable which helps a lot, these are good times to be treating and you know you will get much love and support here from all of us.  Rooting for you!!

Trish

[can-do-man]

Good grief Charlie Brown.......... Thats not good at all girl, are these the same people that read your last results?

Well no need to wonder about whether you should treat or not, plus answers the question on doing that trial, cause its time to start counting pills instead of beans. You know i will be pulling for you.

Between myself, fishdoc, goofy, and many others you'll not only lose Hep-c but also your sanity.

love ya,
zach

[dointime]

I am sorry to hear this news.  It must have been a big shock to you.

I am in the same boat as you were up until now - stage1 liver damage and on a 'watch and wait' routine.  I get tests once a year, bloods, ultrasound, fibroscan, and this has lulled me into a sense of security that I will get a warning if my liver damage suddenly accelerates.

As you have obviously had no warning, I am wondering if I am doing enough.  Do you think that there was something missing from your own routine vigilance that might have given you a warning earlier?  It pains me for the insensitivity of asking you this question after the fact and I am sorry, but any light you could shed on this would be very very helpful.  I mean - if 'watch and wait' is going to be so bloody useless then why should anybody bother.

Anyway thank goodness you have the option of the triple now, and as a relapser you have a very good chance of success,

Very best wishes,
dointime    

    

[Gerbils]

Frightening. I am in tx but still learning alot. I am sorry for the biopsy results but glad you are going to try again with the new meds. I hope everyone who sees this forum that is treating will come back (at least occasionally) to let everyone know whether or not the new meds worked. I am hoping and praying they work for you and will be watching for updates. Take care,
G

[spectda]

" But, when it happens to you…… it is another story.  So, folks, let’s not rely on those old biopsies.  Remember, we feel good until we don’t… "

Very wise words. I am so sorry about the difficult news. Hopefully we will hear some great news from you from the new tx and your liver will be able to heal.

You know we are all with you as you have been with all of us!
-Dave

[Dee1956]

Hey there!  I am so sorry to hear of your news.  I know it must be a shock, it was for me.
The statement "Remember we feel food until we don't.." is so true
I am praying for you
Dee

[child24angel]

I'm so sorry this has happened:(

Good luck on 8/5 and with your upcoming TX.
You almost got to UND before, if you're doing triple
therapy, no doubt, you will achieve SVR.

I sincerely wish you the very best going forward.
Elaine

[Isobella]

I'm so sorry to hear this.  It's a cold hard reality reminder to us.  Very well said-we feel good until we don't.

My heart goes out to you, but it will also burst with happiness for you when we hear that 4 week UND from you.

Isobella

[FlGuy]

You were edging closer to tx anyway.  And after 35 or 40 years you certainly have a lot of mileage left.  A few good things in your farvor; you have knowledgeable docs, you know your way around this stuff with years of experience , it's after May 2011 and you live in Texas.  Even if the doc looks at the slides and thinks it's less than 3/4 by his estimation (like 2/3) I imagine you'd jump in anyway.  Hang in there, Kathy !

[paen53]

Sobering news on the current bx. I remember that feeling well (Stage 4, Grade 3). On the positive side, it got me off the fence about whether or not to tx, got the ball rolling, the deal done and now am over a year post - SVR.

I have no doubt that one day we will be sharing congrats and high fives on your SVR post.

Hit the ground running and keep your eye on the goal. Best wishes, Pam

[Andiamo1]

I had exactly the same biopsy report prior to treating with Telaprevir, so I know exactly how you feel.  As everyone has said, you don't have portal hypertension, so it's not too late.

I had a fibroscan last week, 3 years SVR, and it improved to stage 2 - 3 from 3 - 4 transitional.

I look forward to an SVR party with you!
Best of luck,
Eric

[brianmo]

What an awakening that must have been. I also am starting tx soon, how are you choosing which drug to take?  I consult with my doctor (phone) Aug 1 and she wants me to decide btw the 2 or just do SOC. Hum. Something to think about. I have had 3 bx's and each one has gotton worse, (10 year period) and I could not live a more "cleaner" life.

Good luck to you and we will go through this together.   Mo

[curiouslady1]

I am sorry to hear this news for you but it is good that you found out in time.  This question has been asked before.  What are the advantages and disadvantages of biopsy vs. fibroscan/fibrosure?  How can you tell what goes on with the whole liver from one sample?  The doc says that one test has not been approved in US.  Which one is that?  I know it is probably a good idea to take a test that has developed a bank of information over the years and become the gold standard but any other reason?

[rambleon40]

cirrhosis does not equal death.

my hep c (very) specialist told me that you have a 5% per year chance of liver failure once you develop cirrhosis.  

even money you see 73, right?

[mikesimon]

I'm sorry about the report. I figure you knew you were going to treat again at some point and apparently the time is now.
I'll be supporting you and rooting for you.

Good luck,
Mike

[frijole]

http://www.meddean.luc.edu/lumen/meded/orfpath/cirhosis.htm

good article , good pictures.  I was looking for regenerative nodules and this article has quite a bit - thought you might find it of interest. Your bx said "nodule formation" -- mine said "highlights some regenerative nodules"

Fig.80 - REGENERATIVE NODULES:

these occur in micro and macro nodular cirrhosis.
they arise in the midst of scars favored by the rich arterial blood of scar tissue.
they are round nodules with a fibrous pseudo capsule with bile ductules due to obstruction of bile flow.
they have embryonal type of cell plates, two cells thick, "twinning of cell plates".
nuclei are aligned at the sinusoidal pole of the plates.
they often show focal cholestasis.
they may undergo dysplastic and malignant changes.
they compress the vessels of the capsule contributing to the perpetuation of the cirrhosis.

Now there is another distressing fact -- "may undergo.. malignant changes."

I have a lot to learn.
frijole

[frijole]

i should have prefaced that comment with - i got a lot out of the link you provided with the diagrams of the nodules, portal and bridgin fibrosis and necrosis.  Thank you.  \

My internet service is booting me out - I have lost 3 comments so far, and am trying to respond to some folks but it is frustrating
frijole

[coeric]

thanks for the excellent link.  there are some graphic images of cirrhosis, so mature audiences only. definitely R rated. maybe we can sneak in the fire exit.
as always
coeric

[coeric]

this article has been posted here many times.  it is a sobering reminder.

http://www.medscape.com/viewarticle/554637

Abstract

Background: Age at infection is known to be associated with disease progression rate in hepatitis C virus (HCV) infected patients. The aim of this study was to assess when cirrhosis is expected to occur according to host and viral factors.
Methods: Fibrosis progression was studied in 247 naive HCV patients using multiple regression analysis. The expected age at cirrhosis was calculated for each patient.
Results: Progression rate was 0.13, 0.14, 0.27, and 0.36 U of fibrosis/year for patients with age at infection ≤19, 20–24, 25–36 and ≥37 years, respectively. Age at infection above 37 years was independently associated with fast progression (rate>0.13; P=0.001). Body mass index >25 kg/m2 and alanine aminotransferase>3 × ULN are also possibly associated with faster progression. Based on progression rates, the expected age at cirrhosis is 65.4, 64.6, 64.8 and 69.4 years for age at infection ≤19, 20–24, 25–36, ≥37 years, respectively.
Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis. A specific active monitoring and therapeutic approach should be adopted in older patients to prevent progression to cirrhosis and its complications.

[frijole]

"Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection"

wow - there you go.  I will be 64 in December. I don't believe I have seen this in print before.

I will take a look at that article.  thanks

[frijole]

Took the whole day yesteday but I have read all of the articles linked in this thread.  there are some very good ones here all of which help me with my understanding of progression, the interaction of steatosis and hep C and liver damage, and of course, reinforcing the knowledge of the various levels.

Thank you Hector for the links.  They were very good.

Hector and Willing - thanks for the encouragement and I tend to agree with you -- the biopsy does not appear to indicate cirrhosis.  However, I was surprised about the briding fibrosis, and since I have done some reading on regenerative nodules, am concerned about that.  My slides should be on there way to Dallas and I will be interested to see what they say.

willing - how wise your words were to hear -- good thing I got this bx this year when the PIs are available instead of last year.  It would have had to make some hard choices last year - like lock into 72 week SOC.

Thank you to everyone who posted.  Sounds like some of you were just as floored as I was with this bx.  (Trish - you are right -- sobering was the exactly right term)

flguy - you had that one right -- yes I was ready to treat anyway and this just pushes it over
the top.
can-do - sent you some mail.  ejoli - sent you a message.  doing time - same

I am going to start a new thread on types of biopsies since I have seen questions on this in the past and I have some new opinions on the matter.

[willing]

in the midst of all the gloomy reading you're doing here's something that might cheer you up. From Table 16, page 55 of the Merck FDA submission, summarizing VIC results in RESPOND-2 (previous tx failures excluding null responders who were not eligible):

http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/Drugs/AntiviralDrugsAdvisoryCommittee/UCM252343.pdf

For those UND after 4w of PI,  SVR with RGT (36w) was 89% and with 48w 97%. Among the 'late responders' who still had VL after 4w of PI the rates were lower but still good 80% for RGT and 72% for 48W.

The equivalent numbers for INCI   should be as good. So by the end of Aug. further damage should  have come to a screeching halt and you could be looking at very good odds of SVR.

[frijole]

You know it amazes me you can unravel all of this at week what - 40 or so? Your mind is amazing.  Those numbers are good.  surely I can be one of those early responders.

Just got a call from Dallas and they have me slides but I missed the pathologist's review today so they will get reviewed with the hepo next Tuesday.  (the suspense is killing me)
frijole

[frijole]

This thread is a little old, but I like to follow up on the same thread to end things.

The biopsy stands.  Grade 3, Stage 3-4.  The slides were read by the pathologist and the hepatologist in Dallas.  He said part of the liver has stage 3 fibrosis and part of the liver has stage 4 fibrosis.  Thus it is treated as stage 4 and that is cirrhosis.  He said even though I don't have the other markers -- ALT, AST, platelets, acites (ascites) are anything like that, it is still compensated cirrhosis.  He also said successful treatment would slow down the progress but not reverse it. I will now need ultrasounds or CT scans every 6 months to detect for liver cancer. He also wants me to get the Hep A and B vacinnation and said I can get the first one now, and that it is okay to get the shots during treatment.

The meds have been ordered.  I have spoken to the mail order pharmacy that the doctor uses, and they are waiting for more information to get the Peg Intron approved by the insurance company.  The doctor mentioned that there was no request for more information for the Victrelis, but they may ask for that after the lead-in is over.  It seems that insurance companies are insisting on reviewing the PCR's before approval for the meds. This is creating a timing nightmare for some patients.  He said I can get that 4-week PCR any time the week after the 4th INF shot and it seems that that might be imperative. Although I want the LabCorp QuantaSure test which is sensitive to 2IU/mL, that test gets sent to the California lab and that takes too much time to get the meds ordered in order to start the VIC on the exact date. In any event, it will all work out and the start date will probably be August 19.  I am not eligile for the response guided therapy and am looking at the full 48 weeks.  This is okay with me.  I would be afraid to treat for any less time.

frijole

[frijole]

Side note - I was really impressed that the doctor had ordered the QuantaSure when I was there is June.  This was not the test he would have ordered, but he did it because I said it was my preferred test.  Well, that backfired because I was over the top.  My viral load exceeded the 2,000,000 IU/mL (5,000,000 copies) upper limits of the test.  He did not give me orders for another test, so I guess the one I had last October (2,800,000 IU/mL) would be the pre-treatment VL

frijole

[spectda]

I guess we don't usually worry about the upper limit of detection, be careful what you ask for :). As you said, it's a good to know the doc is responding to what you want.

I am sorry about the result from your biospy. here is one study that disagrees about not being able to reverse cirrhosis
.  
Hoping for a great result from your treatment
-Dave

http://www.natap.org/2008/EASL/EASL_75.htm
Results:

Baseline characteristics of patients were: male gender (71%), mean age (55±9 years), mean BMI (25±4 kg/m2), mean serum HCV RNA level 5.7±0.6 log10IU/ml, HCV genotype 1 (66%), 2 (7%), 3 (11%), 4 (15%).

Fifty-five patients (45%) had cirrhosis (F4), and 68 (55%) bridging fibrosis (F3).

Among the 55 patients with cirrhosis, SVR developed in 24 patients (44%) and was associated with regression of cirrhosis in 11 patients (46%).

Liver histology showed a regression by one, two and three points according to METAVIR score in six (25%), three (13%), and two (8%) patients respectively.

By contrast, regression of cirrhosis was observed in only 5 patients among the 31 patients without SVR (16%), by one and two points in 4 (13%) and 1 (3%) patients respectively (p < 0.01).

Among the 63 patients with bridging fibrosis, SVR developed in 25 patients (40%) and was associated with regression of fibrosis in 9 patients (36%), by one and two points in 5 (20%) and 4 (16%) patients respectively.

[frijole]

dave
The hepo kept referring to to the Halt C study -- the 8-year study done on relapsers with advanced fibrosis.  This was the study that determined that a low dose of "Maintenance" interferon was not successful in halting fibrosis progression.  He told me not to obsess on it, but, of course, I have downloaded the trial conclusions.  I just have not had the time to read all the data yet.

I do have some hopes that I can heal my liver if I achieve SVR.  It just may not be entirely.
frijole