For Jmjm

Jim,

I read a response you sent to someone the other day and I have been mulling it over for a couple of days now. I am not sure if I misread what you wrote or not but your answer has troubled me a little. I can not seem to find the post today when i looked to re-read it. In your reply I think I read that you said that biopsy results can be off by as much as 2 stages. Is that really true and if so where did you read that? Maybe I misread what you posted. I am curious about this as I have never heard that before the other day. Like I said possibly I misread or misinterpretted your response.

[jmjm530]

Two stages would probably be on the outside. But being off one stage appears to be common, especially if they got an adaquate sample size.

The three reasons are: absolute sample size (they didn't grab enough); relative sample size (they only are examining a very small percentage of the liver; and pathologist bias (different pathologists can have different interpretations).

In my case, I had the identical slides read by three different pathologists and came out with stage 3, stage 2 and stage 2.5

Not as close as we'd like, but really not terribly different (not like stage 0 and stage 4), although to be honest if I thought I was stage 2 (instead of stage 3) I'd probably not be here, as I definitetly would not have treated when I did.

If you're in doubt, easy enough to have your slides read by another pathologist. Just request your complete slide set (not just the main slide) and have them submitted for re-evaluation. IMO best to do that in a different hospital from where the original biopsy report was generated.

Where did I read it? Probably over at "Projects at Knowledge" or similar. I'm sure you could google around the likely sites and come up with something similar.

Can I ask your concern?

-- Jim

[DragonSlayer45]

Jim,

Thanks for getting back to me. I find this a little disturbing. We are all taught the gold standard for liver measuring damage is the biopsy. To hear it can be off by a stage or 2 is quite a lot.

The reason I asked goes back to a post I had a few weeks ago asking people about some of their symptoms. I was diagnosed in 2002, geno 1a, high VL. I have always had normal range enzymes and my biopsy was stage 2 grade 2. I like many read anything and everything I could get my hands on. From Dolan to Caring Ambassabors, Janis and Friends, etc, etc.. I decided that since i was geno 1 a high VL and stage 2 i could wait to TX. I made my informed decision. I know all the sides and listen to all the arguments here and elsewhere about pros and cons, long term efffects of treatment, and on and on. I am not an expert by any stretch but know  this disease pretty well. Anyway I was beginning to become more and more symptomatic the last year or more. I started thinking about trials, Standard care, and if I made a good decision or not. I had another Biopsy last Jan and i was exactly the same stage and grade as before (5 years earlier). This is good news although it does not explain why I feel worse than before. Anyway this past year my side is hurting more than ever and I am becoming more symptomatic. This obviously concerns me a little. To hear that a biopsy can be off by as much as it is was a little surprising to me. I had never heard or read that anywhere before.

Don't get me wrong it makes sense that as large as the liver is how they can have a discrepancy in samples and if you factor in different labs performing the tests, I had just never heard about it before. There is so much they just still do not know about this freaking disease and we all seem to learn more with each passing day. Thanks again for the info. i will have to read up on this too I guess LOL

[jmjm530]

I have no crystal ball nor x-ray vision, but less likely a stage 2 (via biopsy) would turn out to be a stage 4. More likely are discrepencies within the stage 2-3 range, such as happened with me where one pathologist pegged me a stage 2, another a stage 3 and still another a stage 2.5. Part of that had to do with how they analzyed whether the fibrosis was bridging or just starting to bridge. In your case, the fact that a second, more recent biopsy comes out with the same result, makes it even more unlikely that your biopsy is off even a stage. Of course, you could have both slide sets re-read by another pathologist if you wanted. Then there's always "Fibroscan' if you can get into a trial or work something out with "HR" through "Forseegood" -- although I think you should have some degree of confidence with that last biopsy. As to your symptons, are you seeing a hepatologist (liver specialist)? What do they say, suggest.

-- Jim

[DragonSlayer45]

Where would I get my slides from (not that I am really interested in doing that). Do they keep them 5 years and are they still viable samples? My biopsy was performed in two different locations by different doctors. My first biopsy was performed in the hospital at the same time my gall bladder was removed. I was scheduled to have my biopsy and then ended up in the hospital with a severe Gall bladder attack. They kept me and Since they were going in I asked if they could take the sample at the same time. The surgeon said absolutely. Since then I moved and have a great Gastro, who is very active with HCV. He attends all the conferences and participates in many trials. he has a good reputation.  As far as what does he say. He has always agreed with me to hold off treating, but at my most recent appointment said all of my achesa nd pains are probably from my Hep and maybe i should think about treating. He also said he would refer me to any one of 4 doctors in Phila. for a 2nd opinion if I want. i did not ask but he offered. I am thinking about all of it.