False fiberscan reading F1 to F4 in weeks

[philbert58]

Just received devastating results of F4 from last weeks laproscopic biopsy. Was told I was F1 from  2010 biopsy before declatasvir experinmental treatment. Had Fiberscan and blood work less than 2 months ago that said I was F1..  Had laproscopic biopsy last week hoping for at least F2 so Insurance would cover Harvoni and found I was F4 but not cirrhotic? Don't know how you can not be cirrhotic and F4? Haven't spoke with Hep-c Dr yet. I'm devastated.. Anyone know of false readings?

[Livelife777]

It is somewhat confusing at times and we all make mistakes.  Think we are on the right track
Dee I would rather have information then inflammation any day!!!!!
Luv it
.....Kim

[Dee1956]

Me too! Thanks for understanding.

[patra_]

I always confuse Grade and Stage.  Calling it the translation - inflammation and scarring - makes it easier to keep track of which is which.  :-).

Pat

[Dee1956]

Thank you my friend.  I think that the grade and stage were listed on my biopsy.  It said I was a 2/4.  Of course it doesn't exactly spell it out.  I had to learn on here what it meant.  I should pull it out to see what it said.  I am just saying this from memory ha ha
2 for inflammation and 4 for scarring

[AWorriedMom]

Please look for a PM I sent you.

[patra_]

Hi, Dee:  Well, at least AutoCorrect gave me (and, I hope, others) a chuckle!  This is a serious subject, so a little unintended humor helps us through it all?  

I kept thinking ' I need to look at my Lab Report again.  I didn't see an information category'.    Pat

[Dee1956]

Sorry my cell autocorrected, above is inflammation, not information.

[Dee1956]

Could the report you are looking at be referring to the amount of information you have? I was rated a 2 for information and a 4 for fibrosis and scarring. I think Deb just meant she was a grade 3-4. It is easy to get confused.  As patients we have to sort through so much information it can get confusing at times. Dee

[dontworry_behappy1]

This is over the top.  I understand.  Cando answered the posters question along time ago.  

Many questions are answered correctly time after time after time day after day.  Mistakes are made time to time and corrected.  It's interesting that some people only show up to drive a point home and absent most of the time.  
This issues has been addressed and overly corrected.   If some of the posters in this thread are so concerned about correct information then you might be presenting that belief on a ongoing basis.

[pooh55811]

The important thing when posting is to be sure that the information one posts is actually correct information. People come here seeking correct information. Posting incorrect information confuses people who are looking for correct and accurate information.

Yes, Can-do posted the correct information. But then 2 subsequent posts (yours and Ekkiemoms) contained incorrect information. It was this incorrect information that AWM was trying to correct.

One of the incorrect posts stated, "I have Stage 3-4 with no cirrhosis and minimal fibrosis." Well, one cannot have STAGE 3-4 and still have only minimal fibrosis. If one has STAGE 3-4 fibrosis, one has at least bridging fibrosis, and bridging fibrosis is NOT minimal fibrosis. AWM was trying to address that inaccurate/incorrect statement.

And, in one of your posts, you stated that, "Stage being the amount of inflammation present I believe and  Grade being your fibrosis score." That statement is incorrect.
STAGE represents the amount of FIBOSIS.
GRADE indicates the amount of INFLAMMATION.
Again, AWM , in her response, was trying to offer the correct information.

Incidentally, we all know that a person can be Stage 1-2, 2-3, 3-4. That was never in question. What was in question was the terminology used, STAGE versus GRADE. Some of the posts (DWBH and Ekkiemom's) were confusing the definitions of STAGE and GRADE and, since they mean 2 distinctly different things, it is important to correct any posts that contain erroneous and misleading information. To leave erroneous information uncorrected would mislead the original poster as well as anyone else reading the thread.

[AWorriedMom]

Phil, I am sorry, I got a bit upset and gave you incorrect information. The Metavir Scorng System and Knodell Scoring for biopsy stage is the same. Stage 4 is cirrhosis. The very good news is that cirrhosis is definitely curable with the new direct acting antivirals. If you have to get diagnosed with Stage 4, you did it at the right time. I have had cirrhosis since 1991 and was cured of hep C in 2012. If that can happen for me, it can happen for anyone.

You asked if your result could be a false positive. It happens once in a great while. With cirrhosis, if the test is going to be wrong it usually errs on the side of being a false negative. Cirrhosis is supposed to be uniform throughout the entire architecture of the liver. At times there will be a small area that is not cirrhotic and if the biopsy needle picks that up, it can look like the person does not have cirrhosis. If the needle picks up cirrhosis, it means it is usually there. I am explaining this because I want to be sure you have the correct information. But I also want you to know, that the vast majority of people with late stage disease will be cured. There are even better drugs coming for everyone. Hang in there and don't despair. You are going to be fine.

[AWorriedMom]

Cheryl, you are definitely misunderstanding me. I did not question having a score of 1-2 or 2-3, etc. I questioned the fact that you cannot be Stage .3-4 with minimal fibrosis. Minimal fibrosis is Stage 1 or 1-2.

Stage 0 is no fibrosis
Stage 1 is minimal fibrosis
Dtage 2 is moderate fibrosis
Stage 3 is bridging fibrosis- the scar tissue is starting to connect across the architecture of the liver.
Stage 4 is cirrhosis

I claimed that it is more likely that Deb has Stage 1 and is using stage and grade interchangeably or incorrectly. I DID NOT say she had cirrhosis. People who are Stage 3-4 have bridging fibrosis heading toward cirrhosis. In fact I told her I thought it likely she has Stage 1. Whether one uses Metavir or Knodell scoring, stage 3 is bridging fibrosis and stage 4 is cirrhosis. And apparently you think I made a mistake talking to Deb  in a thread someone else writes. Well, that does tend to happen in these forums. I then  went on and tried to help Philbert feel better.  

You seem to have it out for me for some unknown reason. So I would appreciate it if you didn't bother to read what I write because you continue to misconstrue what I say.

[patra_]

Bless you!

Isn't it good to see open, lively discussion, without ugliness to mar the exchange?  By exchanges likethis, we are able to all arrive at understanding, correctly, exactly what these things mean.  

Pat

[Rbeth]

~Is there a full moon??

Discussion, support and factual information is a good thing, where would we be w/o it?

All good information... All good people.... All good pursuit as we race TOGETHER to help & support one another to SVR..... and many others:-)

All blessings beloved heppers,
Randy

[dontworry_behappy1]

My understanding is you were claiming Ekkie had cirrhosis at 3-4.   That you couldn't be 3-4 and not have cirrhosis.  In fact you can.  This doesn't have to be made confusing.  It's simple two scores.  Those scores can be a 1-2,2-3,3-4 for each value.  They don't have to be a whole value only.  So this can be confusing as what just happened.  You questioned Deb in this thread.  The question was asked by philbert58 and answered by cando.  

[AWorriedMom]

Please don't be devastated. Can-Do is correct. There are two scales used which can make it a bit confusing. If your doc was using Knodell, Stage 4, that is different that Metavir Stage 4 and not as severe.

However, I was diagnosed in 1991 with Metavir Stage 4 cirrhosis, and today, 24 years later, I am finally cured. So, at least you got what you need to be able to get treatment. You will likely be just fine.

[AWorriedMom]

The issue wasn't about having two numbers to represent the stage or the grade. The issue is that Stage 3-4 has more than minimal fibrosis. Pooh is correct, the stage represents the amount of scar tissue/fibrosis and grade represents the "activity/inflammation of the virus. Minimal fibrosis is always stage 1.

Deb, everything you are saying, " i have stage 3-4 with no cirrhosis and minimal fibrosis" does not make sense. If you truly had between stage 3 and 4 you would have bridging fibrosis heading in to cirrhosis and your doc would not say you have minimal fibrosis. I am willing to bet you are Stage 1 Grade 3-4 and that is better than the other way around. :-)

[dontworry_behappy1]

Yes and my biopsy results said Grade 1-2 and Stage 2. Just took a look.

[dontworry_behappy1]

I understand what your saying but the issue was you can have a value stated as between 1-2, 2-3, 3-4.   This is how mine was explained by doctor.  It doesn't have to be a whole value.  

[can-do-man]

Thanks pooh for providing the correct info.

''In the interest of accuracy:''

Around here??? Good luck.

[pooh55811]

And Ekkiemom:

In the interest of accuracy:

Stage represents the amount of Fibrosis.
Grade indicates the amount of Inflammation


Metavir

The Metavir scoring system was specially designed for patients with hepatitis C. The scoring consists of using a grading and a staging system.

The GRADE gives an indication of the activity or amount of inflammation and

the STAGE represents the amount of fibrosis or scarring.

The GRADE is assigned a number based on the degree of inflammation, which is usually scored from 0-4 with 0 being no activity and 3 or 4 considered severe activity. The amount of inflammation is important because it is considered a
precursor to fibrosis.

The fibrosis score (STAGE) is also assigned a number from 0-4:
•
0 = no scarring
•
1 = minimal scarring
•
2 = scarring has occurred and extends outside
the areas in the liver that contains blood vessels
•
3=bridging fibrosis is spreading and
connecting to other areas that contain fibrosis
•
4=cirrhosis or advanced scarring of the live

http://hcvadvocate.org/hepatitis/factsheets_pdf/grade_stage.pdf

The link is same the link Can-do-man provided above for anyone who is interested to know what Stage and Grade actually mean.

[Ekkiemom]

Yes you are exactly correct.  Thank you for explaining to AWM.
I do have the "Stage/Grade" breakdown on my website if anyone is still curious...

Thx
Deb

[dontworry_behappy1]

I believe Ekkie is talking about Stage and Grade.  I had a stage of 1-2.
and a grade of 2.   So its possible to have at 3-4 without cirrhosis and minimal fibrosis.   Stage being the amount of inflammation present I believe and  Grade being your fibrosis score.

As I remember my results were in two values.   Stage 3 to 4 doesn't mean
full blown cirrhosis to me.

[AWorriedMom]

Your last post has totally confused me. If fibrosis means scar tissue and cirrhosis means severe fibrosis where the liver is scarred throughout, I don't understand how anyone can say you are Stage 3-4, yet have minimal fibrosis. Stage 3 is bridging fibrosis where the scar tissue is connecting. Stage 4 is cirrhosis where the scar tissue is thought the entire liver. So, since your doc said you have minimal fibrosis, it sounds like you are Stage 1. Could your doc have said that you were grade 3-4? That makes the most sense to me.