My biopsy results: what do they mean?

[mike716]

Hi, everyone. I got my biopsy results yesterday and am confused about them. I saw my hepatologist, but he just made me more confused. I'm hoping some of the kind folks here who know about these things will help me out. This is what the biopsy report says:

========================================
Cilindrical specimen 1.3cm.

Microscopy:

- 9 portal spaces, complete and incomplete.
- 6 portal spaces with inflammatory infiltration.
- 4 portal spaces with segmental necro-inflammatory activity in interface zone.
- Presence of lymphocytes, plasmacites, and eosinophils in the portal inflammatory component.
- Intralobular focal inflammatory infiltration.
- Portal fibrosis in 6 portal spaces.

Diagnosis:

- Hepatitis, moderate inflammatory activity.
- HAI: A:2, B:0, C:2, D:3 = 7/18
- Stage 2/6
- Metavir: A:2, F:1
========================================

My hepatologist refused to explain any of this stuff to me, and just said that my liver was still in pretty good shape and that he didn't recommend doing antiviral therapy, at least not yet. He's not much help.

Can I get some read-outs and suggestions on this data? Also, do people here agree with my doc that I shouldn't do tx now because my liver disease isn't bad yet, or that I should treat precisely because I'm not too sick yet. (It seems like the same reasons are given for both treating and not treating.)

Thanks.

Mike

[Willy50]

I just got my biopsy results back also.  I left town to get a biopsy and I too had mine given to me by Ishak scale.  Mine was a 1/6.  I am 55 years old and they told me that I could should wait also.

The principle is that since damage is often very slow it is thought that many of us can wait to treat if we have sufficiently undamaged livers.  Perhaps we can wait a few years for a shorter or more effective treatment.  Perhaps we can wait even longer.  

I was DX'ed in august of 2003.  I've constantly felt that the treatments keep improving faster than my damage.  Mind you, I'm not recommending what other people should do but based on my results my Dr. feels that I should wait.  I'm awaiting a conversation with my doc to ask about my future choices and where he would start pushing for treatment.  My guess is that stage 3 is about that range.

Mike, if there weren't a bunch of improved treatments coming very shortly I think that the advice could be different.  Vertex should be approved in 2010....say in 2ish years.  There are also a number of additional compounds which could be combined with telaprevir which could further increase the efficacy, shorten treatment, or that might soon eliminate our two good friends interferon or ribaviren from SOC, thereby eliminating some nasty sides.  It could be well worth the wait.

I'm going to jump out of the thread and need to start a similar one myself.  I basically have some of the same concerns.  However, I still have less concerns perhaps about waiting expecially if it is a short period of time.  The correct answer will be different for everyone based on their staging, other factors (age, health, speed of progression), the philosophy of the doctor or patient.  There is truely no "correct" answer and I'd say that you have some flexibility.  That may be less true if your staging were higher.

Good question, I'll wait and see what others have to say.

Anyway....my 2 cents.  Nice to finally meet you and respond to your question.

best,
Willy

[smaug48]

I can't help much on interpreting the jargon, but I had a biopsy in 2003 with similar results to yours (or I should say, interpreted similarly).  Diagnosed as a stage 2 out of 6:  "fibrous expansion of most portal areas, with or without short fibrous septa"

I was recommended to treat, but I decided not to because I heard tx horror stories from a local acquaintance, and I felt completely fine (and I hadn't found this forum yet).  Then in 2006 I had appendicitis and had another liver biopsy done.  This time a different doctor at the same teaching hospital told me I was a stage 3 out of 4.  I'm txing and just took shot #24.

That doctor also looked at my 2003 biopsy and stated that she would have diagnosed me as a stage 3 out or 4 even back then.  If I was told I was a 3 out 4 in 2003, I'm sure I would have treated then (and I wish I had).

My point is that interpreting a biopsy is not black and white.  If you are considering not treating right away, you might want to consider getting a 2nd opinion on the diagnosis before making the decision.  Couldn't hurt.

Best of luck to you!

smaug

[HectorSF]

Mike,

Your liver is in good shape. If you are genotype 1 (sorry I forget), you may want to wait for more effective treatment. The choice is yours. The nice thing is that you have time. Time give you options. You should have many years before developing bridging fibrosis and cirrhosis where the fibrosis would start to affect your chances of successfully clearing the virus.
Let's see what others have to say.

Metavir scoring system:

Grade: (how much active inflammation is presently going on)
A:2 = moderate activity

Stage: the stage of fibrosis (how much damage is already present)
F:1 = minimal scarring


The Ishak Modified HAI
A modification of the Knodell HAI system, more sensitive and accurate in assessing fibrosis. Fibrosis staging is scored from 0 to 6, which permits physicians to better assess the effect of therapy on fibrosis.

HAI: A:2, B:0, C:2, D:3 = 7/18 (7 out of a possible 18)

Ishak modification for hepatic activity index (HAI) for scoring of necroinflammatory activity in chronic hepatitis

(A) Periportal or periseptal interface hepatitis (piecemeal necrosis) -  associated with hepatocellular necrosis (death of liver cells)
Absent 0
Mild (focal, few portal areas) 1
* Mild/moderate (focal, most portal areas) 2
Moderate (continuous around o50% of tracts or septa) 3
Severe (continuous around 450% of tracts or septa) 4

(B) Confluent necrosis
* Absent 0
Focal confluent necrosis 1
Zone 3 necrosis in some areas 2
Zone 3 necrosis in most areas 3
Zone 3 necrosis+occasional portal-central (P-C) bridging 4
Zone 3 necrosis+multiple P-C bridging 5
Panacinar or multiacinar necrosis 6

(C) Focal (spotty) lytic necrosis, apoptosis and focal inflammation
Absent 0
One focus or less per _10 objective 1
* Two to four foci per _10 objective 2
Five to ten foci per _10 objective 3
More than ten foci per _10 objective 4

(D) Portal inflammation
Absent 0
Mild, some or all portal areas 1
Moderate, some or all portal areas 2
* Moderate/marked, all portal areas 3
Marked, all portal areas 4

More biopsy info + details:
http://janis7hepc.com/biopsies.htm#scoring%20and%20grading%20biopies

Cheers!
Hector

[Marcia2202]

Congratulations I would say to A2 F1. Much better than expected.

Personally I would not wait for treatment. I am standing with Dr. Dieterich's advice, to treat now.

http://www.mssmtv.org/player_alf/player.php?id=alf_2007_01

But I guess you do have a choice. So you do not need to rush head over heels into treatment. Take your time to line up all your ducks.

All the best, Moussa

[rita863]

I want help to help you read your results sorry, but i read what Hector wrote and seems like congrats are in order!11  you have options.  good for you!   hope that talking to all on here as eased your mind some.

peace
rita

[mike716]

Hi, Willy. Thanks for your good words. It's a relief to hear from someone who's in the same boat as myself, and who has gotten a similar analisis from his MD. I like your optimism about new treatments. It cheered me up, as I am usually on the pessimistic side. Also, I don't trust the docs down here in Argentina. In my paranoid way, I wouldn't put it past my hospital here to have told all the hep docs not recommend therapy for anyone below F2 because of the cost of treatment. It's a horrible thought, but you never know. Private hospital in the 3rd world...

But, what the heck, the sun's out today and I'm gonna pretend all's right with the world. At least for a few hours :-]

M.

[mike716]

Hi, Trin. Thanks very much for your post and the cheery thoughts. I guess I should be overjoyed with not having to go on tx right away, but I'm so paranoid about the doctors at my hospital that I don't trust the hep's decision. It seems to me that all the arguments for not doing tx now could be used for doing it, too. Like trying to clear the virus when your liver is still intact. But what do I know?

I'm trying to post my test results for Dr. Dieterich to look over, see what he says. And maybe I'll go for a coupla second opinions here in Bs As. (There's nothing like collecting second opinions for throwing any sense of security out the window :¬] )

You know, what really makes me wonder about these diagnoses and tx recommendations from MDs is that no one knows, or ever will know, when I was infected. Being F1 after forty years would be great. No progression. But if I was infected six months ago, that's another story altogether. See what I mean?

Man o man, this HCV is a real can of worms...

M.

[mike716]

You've hit the nail on the head, Smaug. It's all a matter of interpretation. I don't have a lot of faith in the biopsy, much less how it was interpreted. Biopsies can be way off. And so can those who analyze them, as your case shows.

I'm gonna do just what you suggest and get some second opinions. As many as I can afford. Then I'll compare them. Heck, this is a life-depending decision. If I don't treat, and then ten years from now I have cirrhosis, I'll feel like an idiot.

Plus there's simply no telling how long I've had the virus. I have no idea when I was infected. So how can the hep MD know how the liver disease is progressing? There's a world of difference between F1 after six months and F1 after forty years.

Hey, good luck with your tx. I hope those side-effects are not hassling you too much. And thanks again for the words.

Mike

[mike716]

Hi, hector. Nice to hear from you again. Thanks for the useful info and advice.

You wrote: "If you are genotype 1 (sorry I forget), you may want to wait for more effective treatment." Yes, I'm 1b. And that's pretty much what my hep MD said. He thinks that my being 64, 1b, and >850k UI RNA, my chances of clearing the virus aren't good enough to risk the side-effects. Is he right? Maybe, maybe not. All depends how I end up progressing to stage 3, 4, etc.

"You should have many years before developing bridging fibrosis and cirrhosis...". I sure hope so. But wouldn't that depend on how long I've been infected? If I'm A2 F1 and I've only had the virus six months, my liver disease could be progressing kinda fast, no? How can anyone know how long it will take me to get to bridging fibrosis and cirrhosis, if there's no way to know when I was infected?

Thanks very much for the details on the HAI scoring. At least now I know what those numbers mean, which helps.

Making decisions based on all these weird numbers is scary. It's like betting on the ponies from the scratch sheets. You can't tell if what you're looking at is what it seems to be. And man do I hate surprises... :¬]

M.

[mike716]

It's a very hard call, Marcy. I'm sure you're doing the right thing. But I'm 64, genotype 1b, and have a relatively high viral load. That's not a promising picture for treatment. Still, it might be worth the try, even with an SVR probability of only 20% (that's what the books say). If I cleared, I could live in peace. Otherwise, I'll spend what's left of my life scared and worried all the time. But who knows? It's one of those "dam*ed-if-you-do-dam*ed-if-you-don't situations. Russian roulette.

Mike

[mike716]

Being able to exchange posts with you and all the other wonderful people in this forum is saving my life by saving my head. I owe you all a debt of gratitude.

As to my options, I wish I could handicap 'em. Making decisions when you don't know the real odds is a sucker's play. And not knowing how long I've been infected is betting without the odds.

But, hey, I've still got my health and I'm not dead yet. An automobile could run over me this afternoon. And that's no joke the way they drive here in Buenos Aires ;¬]

M.

[rita863]

Mike

I know how you feel.  I feel like i needed a medical degree to start this TX just to interpet what my test results said.  Thanks to all of this wonderful people I (we) are getting educated.  When in doubt go for the second opinion.  I have done it twice durning TX.

Enjoy the Day!

Watch out for  the cars though!  

peace
rita

[mike716]

In Buenos Aires the cars don't slow down when they turn corners. It's crazy. The only way to cross the street is to wait for the red light and make a dash for it when no cars are coming. Real scary stuff. Last week I met a Norwegian girl at my hospital who was hit by a bus. Bs As has the highest automobile accident rate in the world.

I don't know what the **** I'm doing here. I gotta get my head examined.

Mike

[Marcia2202]

guess you gotta go back to NYC to get into a trial

Marcia

[mike716]

Ha-ha. There you go, sneaking up on me from the side :¬]

Nah, I'm not gonna do tx in the Apple. That's just going too far. The Apple is doom under the best of conditions. On tx it would be fatal. I wouldn't wish tx in NYC on my worst enemy.

Now the coast of North Carolina with a 30-foot sloop, that would be another story...

M.

[Marcia2202]

gotcha.... well, than go to NC then....

Marcia

[mike716]

I'm checking out the sailboats in Chesapeake Bay right now...

M.