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Avatar universal

Biopsi or not before treatment?

Hi all, new here. Need help to understand if I made the right decision or not.
I am a 1a, TT, have had this disease probably 35 years, diagnised 2010.

First biopsi in Aug 10: stage 2, inflammation grade1.
Fibroscan May 2012: 9,6 kpa, which my doctor said was still stage 2 (but I have seen info that says stage 3).
Fibroscan February 2013: Suddenly 12,4, my doctor says I am late stage 3 (I have seen info that 12,5 is csirrhosis). He said it seldom goes this fast. There were no time for information, he just said he would do a biopsi some time in March and then we should start treatment.

I called him a couple of days ago to express my concerns about biopsi since it did not go very well the last time and I had terrible pain. Then he said that he could do without a biopsi and we could start triple treatmend within some few weeks. Without a biopsi he will consider me a stage 3 which means that should the not very likely situation occur that I will get an EVR I will only get 24 weeks of treatment. I asked him if we could do a biopsi then but he said he has never done a biopsi during treatment we could do another fibroscan.

Is it a bad decision not to do the biopsi even if the doctor says he can do without it? There is also the fact to consider that if I have csirrhosis I should start doing ultrasounds twice a year. On the other hand a biopsi is not necessarly 100% correct either since it is only such a small part examined.


21 Responses
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1815939 tn?1377991799
Another good article:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296085/
Helpful - 0
1815939 tn?1377991799
I am going to try to find some more links. I have them bookmarked but not saved in any organized manner, so I need to try to find the links which may be helpful.

http://hepatitiscnewdrugs.blogspot.com/2012/12/predictors-of-response-to-chronic.html

http://www.clinicaloptions.com/inPractice/Hepatology/Hepatology/ch8_Mgmt_of_Hep_C_Infection.aspx

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2012%20Annual%20Update/Modules/HCV_Management/Pages/Page%201.aspx

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0034372

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/ClinicalThought/Thought02.aspx

http://www.clinicaloptions.com/inPractice/Hepatology/Hepatology/ch8_Mgmt_of_Hep_C_Infection/Pages/Page%207.aspx


This is general, but a good article:

http://www.clinicaloptions.com/inPractice/Hepatology/Hepatology/ch7_Hepatitis_C_Epidemiology_Pathogenesis_Diagnosis_and_Natural_History.aspx
Helpful - 0
Avatar universal
I am not sure wether my doctor is the same as you call a hepatologist.
I go to the kind of doctor that handles all Hep c cases in my country. They handles all kind of infection diseases, hep and HIV etc.

He said to me at my last fibroscan that it does not matter if you treat in stage 2 or stage 3, the % of SVR is the same. It makes me so insecure because it is not what I read here and elsewhere.

In the link that Pooh gave me it also says to treat late stage 3 the same as stage 4, 48 weeks.

But my doc says without a biopsy he will see me as a stage 3 and in case of EVR I will only have 24 w. I doubt very much that I can influence the length of treatment. I can give him printouts from Poohs links maybe, but that will probably just annoy him. He did say though that in case of EVR he could perform another Fibroscan to help decide length of treatment.

We have the right to seek a second opinion from another doctor, I shall try to find out tomorrow how to do that.

In Oct, before the last fibroscan result he said that if I were to treat then (when I was still 2-3 for all we knew) I would have 50-60 % chance of SVR.

Helpful - 0
Avatar universal
If it were me, I would treat now, using one of the triple therapies, and I would treat for 48 weeks.  My husband's hepatologist, who is experienced with both Hep C and liver damage, once said that she treats f3 exactly as she treats f4, in terms of Hep C. I am assuming from your post that your doctor is a gastroenterologist.  If it were me, I would look for a hepatologist to manage my care/treatment.
Advocate1955
Helpful - 0
1815939 tn?1377991799
I agree with you that the ALT and AST results are not as helpful as one may wish in determining your liver fibrosis stage. They do fluctuate and they CAN  be normal or near normal even with a lot of fibrosis.

I can see why you are not sure what to think of your Hepatologist and his attitude and the conversations you have had with him.

The triple med treatment is quite successful. Depending on various factors about 75% of treatment naive people attain SVR, although the SVR rates are lower for people with cirrhosis.

I was diagnosed with Hep C in July 2011. My liver fibrosis was Stage 2. I started treatment in Sept. 2011 (Interferon, Ribavirin, and Incivek) and finished treatment in Aug. 2012. I attained SVR (25 week post EOT VL UND Feb. 18). I had to treat for 48 weeks because I was still detectable at week 4. I would do the same thing again, treat as soon as possible.

There are new drugs in the pipeline but, as you know, no one knows when they will be available for the public, perhaps 2-5 years or longer. The triple med treatment is no picnic but it is quite successful. There are many on this forum who have done triple med treatment and attained SVR.

I am not a fan of waiting. Liver fibrosis can advance, making it more difficult to treat and more difficult to attain SVR.  And people can develop other medical problems which may make it difficult to treat. In addition, many have extrahepatic manifestations of Hep C.

One member, frijole, keeps spreadsheets on some of us who have treated and who are treating. If you would like to take a look at them, type her name into the search box at the top of this page, go to her profile page, and look at the white sheets in her photo section. The spreadsheets contain our names, Genotype, treatment drugs, VL, previous treatment, when we attained UND status, what the outcome was, our side effects.

Or just click on this link:

http://www.medhelp.org/personal_pages/user/223152

Here is another short video you may wish to watch. He is urging doctors to get off their butts and treat people with Hep C.

www.medscape.com/viewarticle/779068

Pick the site, A Killer of a Reason to Treat Hepatitis C.

You may have to register but it is free.



Helpful - 0
Avatar universal
Thank you so much for your input. Nothing dangerous happened at my last biopsy, it just hurt a lot. They said to me that one has a lot of nerves in that area and that it happens that they accidently come to touch a nerve.
First they gave me some tablets that did not help and then I got a shot of some morphin kind of medicine that quickly helped. I guess that there is pretty good odds that this will not happen again. The doctor that performed the biopsy is my hepatologist and the nurses said that he is the most experiensed in doing them.

A problem for me is that I find it hard to fully trust that my Hepatologist wants what is best for me. This might say more about me than about him though:) But he has said some things that make me wonder. Where I come from we don't have to pay for treatment and that is of course GREAT but on the other hand we have very little influence about when to treat and stuff like that.

I've been asking about treatment since I first saw him in 2010. Then he told me new better meds were to come within a year. Next visit he said meds were here but there were other patients in worse shape than me who should start first. In May 2012 he said that now we were waiting for second generation and in Oct 12 he explained to me that I don't have to wait and hope for the DAAs because since the new better meds (triple) has come they have been more restricted with whome to treat or not because of the increased cost. It doesn't matter if the 12 weeks interferon free treatments comes, they now only treat from stage 3, they can't afford to treat everybody. When I pointed out to him that the sooner you treat the better chances you have he just shrugged his shoulders. I asked him if one could pay for treatment and he said no and added that in his opinion it would be more reasonable if Hepatitis patiens payed for their own treatment.

That really made me wonder about his attitude. Also, it is a good thing for a doctor to be honest but it is also so valuable if they can find it in their heart to try to encourage their patients in some small way. Maybe they feel the need of holding the distance to manage to do their job.

For me this conversation kind of took my hope away and I felt that the only thing I had to look forward to was getting worse. This made me kind of desperate and the six weeks before my last fibroscan I've been on Heptech wich I have now stopped because of the upcoming treatment. Right decition or not - who knows.
Helpful - 0
Avatar universal
Thanks for your reply, you have exactly understood my concerns about getting the right duration of treatment or not. I will read the links you sent me and concider what you said.

I guess my liver values will not help much to evalute wether stage 3 or 4?
I have managed to convert my ALT/AST/GT values and they are as follow:

Alt went from 52 in October to 66 in Feb, Ast went from 53 in Oct to 56 in Feb. I know the difference is small and that they do fluctuate. GGT was the same as Alt, also slightly higher than before.

In the beginning of February I also have some other tests done. I have not been able to covert them though but I will add the reference values.

Albumin 41 (36-45)
Bilirubin 8 (5-25)
Platelets 225 (165-387)

My hepatologist says there is nothing here that indicates csirrhosis.
Helpful - 0
Avatar universal
Thanks for your reply Hector. I am aware of your own huge difficulties and I think it is amazing that you still can find the strength to try to help so many others.

You referr to my biopsy in Aug 2010 but what about the newly taken Fibroscan result? I know you don't have access to fibroscans in the states yet but I also know that you are all well aware of every new thing that has to do with this disease.

Like everybody else here I'll be thinking of you and wishing you the best.
Helpful - 0
1815939 tn?1377991799
You may also be interested in this presentation about viral resistance in triple med treatment. It is an excellent presentation and it is worth watching the entire presentation. Much of th discussion concerning triple med treatment begins at slide 32.

http://74.43.177.57/courses/2010/pg/pawlotsky/player.html

Helpful - 0
766573 tn?1365166466
"I guess I will have to trust my doctors opinion that I still am in late stage 3 and that he can do without the biopsi. I got scared when he said he has seldom seen such a fast progressment in only 8 months (from first to second fibroscan)."
_________________________________

If it was me I would want a recent biopsy. I do not say that lightly since I can imagine how uncomfortable your first one must have been. You seem to have put a lot of time and thought into this given how well you understand Incivek treatment duration ~ especially since you are treatment naive.

I get your reluctance to have a biopsy but maybe a different doctor can perform the procedure (???). Both mine were painless and uneventful so I guess it is easy for me to discount reasons others might be reluctant. Knowing how far your fibrosis has progressed would take a lot of guesswork out of treatment duration.

I am thinking it is easier to rationalize stopping treatment early if one is eRVR but with only guess work to support the possibility of cirrhosis. 48 weeks is a long time and this treatment can be pretty tough.

Plus as the elements in Pooh's link point out we don't really know much about your health or other factors that influence the decision to treat.
Helpful - 0
1815939 tn?1377991799
This may also be of some help to you:

http://www.clinicaloptions.com/inPractice/Hepatology/Hepatology/ch8_Mgmt_of_Hep_C_Infection/Pages/Page%205.aspx

Helpful - 0
1815939 tn?1377991799
"I am a 1a, TT, have had this disease probably 35 years, diagnised 2010."

"First biopsi in Aug 10: stage 2, inflammation grade1.
Fibroscan May 2012: 9,6 kpa, which my doctor said was still stage 2 (but I have seen info that says stage 3).
Fibroscan February 2013: Suddenly 12,4, my doctor says I am late stage 3 (I have seen info that 12,5 is csirrhosis)"
------------------------------------------

You are 1 a, TT.
Your first biopsy in Aug 2010, 2 years and 7 months ago, was Stage 2.
I am not sure how accurate the fibroscans are, but your latest one in February 2013 shows Stage 3 pushing Stage 4.

You said you will be doing triple medication treatment (Interferon, Ribavirin, and a Protease Inhibitor).

Here is the problem. If you are Stage 4 then you need to do 48 weeks of treatment regardless of anything else. Cirrhotics do 48 weeks of treatment whether they have an eRVR or not. So knowing your liver fibrosis stage is very important. Also, some doctors recommend 48 weeks of triple treatment for those patients with late Stage 3 fibrosis / advanced Stage 3 fibrosis (people who are bordering on cirrhosis). Cirrhotics have lower SVR rates with only 24 weeks of treatment. Those cirrhotics who do 48 weeks of treatment have higher SVR rates.

You were Stage 2 fibrosis 2 years and 7 months ago. We have people on this forum who moved from Stage 1 or 2 liver fibrosis to Stage 4 liver fibrosis in 2-3 years time. So it is possible for you to have advanced rapidly in your liver fibrosis.

If it was me I would get a liver biopsy to confirm what my current liver fibrosis stage is. You will be able to make a more informed decision on how long to treat (for the best possible results) if you know what your current liver fibrosis stage is.

Here is a link to an article. It has several sections to it, but each section gives you information about various factors and treatment results.  You may have to register, but it is free.

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide/Pages/Page%202.aspx



Helpful - 0
446474 tn?1446347682
'First biopsy in Aug 10: stage 2, inflammation grade1.'
You have very little inflammation so you liver disease is progressing slowly.

You already have a biopsy and fibroscan. You don't need another. A biopsy is only needed every 3-5 years. You can't change what already is. It makes no difference at this point. What are you going do undo your liver disease. You doctor unfortunately doesn't appear to know much about liver disease to make this and issue. Is this a gastro?

There is no reason to redo what you already know. Move forward. Treat now and see how you respond.

Good luck.
Hector
Helpful - 0
Avatar universal
Good.  Take a breath.  It's all scary and just requires you to learn as much as possible and then jump in with both feet into the treatment.  Good luck.  We're all here to support you.
Helpful - 0
Avatar universal
Thank you for taking the time, that really helped to sort things out.
Helpful - 0
Avatar universal
We definitely understand how it's easy to become overwhelmed with this stuff.  I went through 56 weeks of treatment.  My unprofessional opinion is that you can assume the Stage 3.  If your plan is to treat either way on the Stage 3 or not, I would just treat without the bx.  My doctor said the same thing to me when I was first diagnosed - if I was planning to treat right away anyway he was ok skipping it.  Once you're on the treatment, there are strict guidelines as to how long to stay on it.  I'd think that your dr would go by your blood results at certain time intervals on treatment in order to make decisions about length of treatment, and not by what stage you were at beginning of treatment.  Even the bx can be somewhat inaccurate by taking a sample from one part of the liver which may not be anything like a sample from another part of that liver.  Hope that helps.
Helpful - 0
4896357 tn?1360670904
I never had a bx and am doing triple therapy.
Helpful - 0
Avatar universal
It surely would be nice not to do another biopsi and go directly to treatment. I guess I will have to trust my doctors opinion that I still am in late stage 3 and that he can do without the biopsi. I got scared when he said he has seldom seen such a fast progressment in only 8 months (from first to second fibroscan).

Maybe the question of 24 or 48 weeks will never occur, if no EVR I will have to do 48 w anyway.
Helpful - 0
Avatar universal
No, If I don't get EVR  I will have 48 weeks anyway. But if I do get an EVR I will only do 24 weeks since doc will consider me a stage 3. My fear is that even if he decides to consider me stage 3 I might already have csirrosis and therefore would need 48 w even if I get an EVR.

I am sorry for my long and confusing post, I feel so confused at the moment and still in chock of the rapid progressment, so many decisions to make and also what to tell my boss etc etc.
Helpful - 0
148588 tn?1465778809
I would start tx without another bx. Depending on your response, the doctor may choose to extend tx and depending your sx you may decide 24 or 36 is plenty. For geno 1, when you become UND is more important than your IL28B type. I would give more weight to your bx results, especially if fibroscan is giving you varying results in that 2-3 range. It's good that you are planning ahead, but your viral load response is something you won't know until you give it a try.
Helpful - 0
Avatar universal
Can you specify the question?  Is the issue that if you don't get EVR, you'll have to go 48 weeks and your Dr won't do that as a Stage 3?
Helpful - 0
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