the Importance of a Biopsy

[cougareyes]

In view of many recent post here, and on other forums; it was on my heart today to make a statement concerning pre-tx biopsies.
Personally I don't understand the number of doctors that are saying the biopsy is unnecessary.
Reading post from people that get into complications during tx and have to make decisions to up meds, extend tx, or stop; I am not sure how that decision can be made without understanding what's fully at stake. Or taking unusually high unnecessary risk because the level of liver damage doesn't warrant the risk of the drugs.
Until the alternative methods to the harpoon becomes more predictable and accurate, it's what we've got. And it isn't that bad, mine was CT guided and my overall experience was very good.
Please anyone is the position of making tx decisions, get a biopsy; if your doctor disagrees and you can't persuade him. Get a second opinion. Just one man's thoughts...Peace

[scubadiver30]

BTW, I have a VL of five million and I'm still totally asymptomatic. I found out I was HEPc+ just by chance in a routine checkup.
I wanted to start TX asap but if the drs tell me I should waita couple of years, I guess I should wait...If not, who can I trust in this matter???
I have also seen planety of your posts on sx and the long term consequences that should be considered also.

And thanks again for everything
Diver

[Tyree2005]

I am 1b and having a biopsy on Thursday.  I know I will be receiving tx regardless of the stage or condition of the liver.  How soon after the biopsy should I be starting my tx.  I am ready to get this over with so I know the sooner I start the sooner I would have kicked this HCV in the butt.  And belive me I am going to kick it dead in the middle.  LOL
Tyree.

[cougareyes]

I was so exhauted and hadn't really sleep for a couple of weeks. I started taking 10mg Ambien, you can break it in half if you like; it really knocks me out. I try not to take them every night, but I hate to say for the first time in a long time, I look forward to "bedtime".       Peace

[friole]

There is so much support in the medical profession for it being the "gold standard" in determining the state of the liver, it is amazing how many doctor's want to forgo it.  My doc is a "treat whatever" type of doc and did not want a biopsy.  I think many feel the same way.  Many don't want to do it if the patient is a genotype 2 or 3, since treatment is so short anyway; however there is a good paper in the Liver Conference on the reasons to biopsy for geno 2's and 3's.

At first I thought I would not treat if I were grade 0 or 1.  However, I did decide to treat with a grade 1 biopsy.  This biopsy will aid in my future decisions, since I was not totally clear at 12 weeks.  

In Dutch Boy's friend's case, it may be true that the liver damage may not be very much yet.  However, had he had that baseline biopsy, he would be able to determine the speed of the disease progression with subsequent biopsies. Although there are posters here with low VL and significant damage, with a VL reaching 24 million, I would be concerned about a quick degradation of the liver.

MissMiss - you asked about the stages of the biopsies and which ones to be worried about. You are right that with a grade 3 or 4, you have little choice but to treat ASAP.  However, if you have ever looked at pictures of the various stages, even a 1 is not a pretty picture.  When I posted my biopsy results,, Willing gave me some excellent links to slides.  I was able to see how the inflamation (inflammation) led to the fibrosis (scarring) which led to the necrosis (cell death).  In my (totally unprofessional) opinion, once that progress starts, it needs to be stopped - so I worry about all stages except 0.  But that is just me.  I will look for that old post because the slides are very good.

friole

[doll face]

Cuteus and I both went 72 weeks, You probably don't know me, I haven't been by here in a couple of months now, but I would like to answer your question on "how hard was it to stop and pull the plug?"


For me it was extremely hard as I had already relapsed once after 48 weeks of Peg combo then to have to do 72 weeks of Pegasys combo. The anxiety of stopping was horrible as I had to realize that I wouldn't have the safety net excuse of tx to rely on as too why I didn't feel good and I knew that the meds were working as long as I kept taking them. But after a couple of weeks or so I forgot all about planning everything around my meds.

[doll face]

I forgot to mention that the first week I felt great but I tried to do too much too soon and I paid the price. I hurt soo bad that I called and begged my doctor to put me back on the meds. I was sure that I had relapsed again.

I don't know if you are just stopping or getting ready to, but please go slow and keep drinking your water. Those are some heavy duty drugs and need time to get out of your system.

[cuteus]

"Or was your mind telling you maybe a couple more weeks or one more shot?"

ok, where did you get the crystal ball?

As sick and tired as you are of taking these meds for months, as the end date approaches the terror of relapse overpowers the former state and you just keep taking "one more for the road".
I had enough meds to take me another two months past 72 wks, had I chosen to. Instead, I stopped the riba with the last "official shot" and continue two more wks at half IFN. Then, I knew I had to let go and pry my fingers from the interferon/security blankie, so I did. Maybe with a silent prayer.
I gave the rest of the meds away to a dear friend from MH.
I felt better right away after the last Riba, and felt nothing extraordinary after stopping IFN. No "withdrawals". Two wks later I had a two day "crash" (physical and emotional, I thought for sure that was the day or relapse. But then, I  returned to the recovery mode.

None of the choices with HCV seem easy and trouble free.

[cuteus]

wow! that is so similar! I guess the emotions are all the same with HCV.
Live long and HCV free!

[johnisme]

Hi, Well actually im just about ready to start tx. And to me it seems like the closer people get to the finish line the harder it is for them to stop. Im a stage 4/4 grade 3 so i need to give it my best shot. I had a talk with my doc. and he seemed to agree that 36 weeks after i clear was ok with him as long as i was responding but anything longer he was against. Its seems that sometimes this becomes a crutch for some, and i got the feeling from him that the risk out weighs the reward at some point. He put my odds at around 40% of clearing and said some could treat forever and relapse after they stopped.

[johnisme]

Thanks, I keep telling myself i won't let the stress of this get to me, but then i wonder if i do get to that day how i will feel.

[mikesimon]

I too did extended TX - 73 weeks. I relapsed after 52 weeks of Peg-Intron which was my second TX. My first was with regular interferon 3x per week. My third time I did Pegasys and Ribavirin and cleared at 12 weeks and continued for 62 more weeks. I'm still clear as of 10/2005 and I stopped TX 6/2004. It wasn't that hard for me to stop. I knew I had to stop at some point and I figured that I'd done all I could and the chips would fall where they'd fall. Mike

[azgrl]

I am all for getting biopsies.  I wasn't going to get one because my ultrasound came back normal with the exception of a fatty liver.  I've only had hep c for 4 1/2 years and I am at stage 1 grade 1.  I am sooooo glad I got the bx done otherwise I never would have known.  We also know the timeframe of my getting hepc based on a previous negative test.  I really expected the bx to come back with no damage at all.  You never know how quickly or slowly this disease will move so it is important to treat each person individually.  

It was painintheside's story that actually finalized my decision to get one done.  She's at stage 4 cirrhosis in 16 years.  I believe that was the timeframe for her.  So you never know.

deb in az

[cuteus]

I guess you just never know for sure which one is a crutch and which is going the extra mile to give it your best shot. I got my riba lowered at 8 wks or so, add to that all the ones I forgot, then they forget to increase the riba for months, I did not clear at wk 12, and all those negatives trump the mild damage from bx and the low initial VL. At that time, since you are not responding in the "classical" manner expected, you have to decide whether to individualize your tx to ensure SVR. There were only two studies I could use to fight for extension, now there are more. I finally got that extension and I know a lot had to do with the fact that I was not having severe side effects from the tx, and the anemia was controllable.  The thought of having to do this tx again was like a nightmare, going longer, though almost as horrendous, was the lesser of my two evils.  They keep using 36 wks from clearing, but that is the minimum suggested, more than that is sometimes recommended.

Best to you on your trip, and hopefully you will be a responder from the get go and post tx.

[jmjm530]

You were talking to arguably one of the best hep c doctors/researchers in the world, or at least someone in his group.

If he doesn't think you need a biopsy, and your three European doctors don't think you need a biopsy, I think your decision should be real simple. No biopsy.  

Yes, there's only like major complications in biopsy in around 3 out of a 1000 patients. But somebody has got to be in those three. Like he said, Fibroscan is quite accurate at the F0,F1 level and also quite accurate at the F4 level. As far as the middle goes, needle biopsy is probably more accurate but even there scores on the same individual can be off as much as two stages depending on relative sample size, absolute sample size and pathologist interpretation.

Once fibroscan gets refined in this country and gets combined with a good blood marker panel, you will start seeing fewer and fewer biopsies performed. Not only will it be as good but better because it can be used more often to track treatment and treatment decisions.


-- Jim

[worrywortmom]

I have hep-c 2b and i have a very high viral load of 37 million , i have been reading your posts and some of you have said that a high viral load gives a lesser chance of clearing, is this true? My specialist wont give me a bx yet so i have made and appointment with another doctor to see if he will. will i have to wait for the results of the bx before i can start treatment and with my viral load so high why are they takeing there sweet time to start treatment.

[jmjm530]

Yes, high pre-tx viral load is a negative preditor for SVR but so are lots of things like genotype 1, being overweight, Afro American, etc.

In any event, your viral load is what it is and if you have significant liver damage and/or a geno 2, you mine as well treat. On the other hand, if you have little or no damage.

I recently proposed that those with very high viral loads and minimal liver damage might wait a little and repeat a PCR in 4-6 months to see if your viral load came down. I still think this is a legitimate approach in watch-and-waiters but frankly the idea didn't get a very warm reception here :)  Good luck on proceeding forward.

-- Jim

[brightoneason]

I dont know anyone in the UK that has started TX without first having a biopsy...there are thousands of us and we all get a biopsy. I should mention that our healthcare cost is taken as a tax on our salary, for this i am gratefull.

[friole]

Just compare AZ girl and me.  We are both grade 1, stage 1 yet she has been infected for 4 1/2 years and I have been infected for 35 years.  Now how does logic fit in anywhere?  I say, get the biopsy

[NYgirl]

Word for word - I agree 100%.

I can't even FATHOM anyone trying to decide rationally to treat or not if they have not had a biopsy.  I CANNOT understand a doctor NOT prescribing one!

I know people have had their ultrasound who have been told "it's fine you don't need to treat" (I WAS) Turned out at the bx that I found out I was grade 2 stage 2 - almost 3.  

WOW IS THAT SO NOT WHAT THE DOCTOR SAID AT MY ULTRASOUND!!!!!!

SO glad my doctor did not listen to THAT advice! I feel so bad for the people who DO! IT'S SO MISLEADING!!!!!!!!!!!!!!!!!!!!!!!!!!!

I heard Pam Anderson saying that she "monitored her v'l and that was enough" for her to know whether she needed to start tx or not and I was so PISSED off at the stupid bimbo I almost lost it.  If you are going to give out information...give it out RIGHT.

If anyone is trying to decide to have one or not.......PLEASE HAVE THE BIOPSY!  The biggest hardship of the whole procedure is the anxiety before hand. It's over so FAST and then you have definitive RESULTS not GUESSWORK to use as your basis for decision.

Please.

[virtualsuzyq]

Your posts are timely for me.  I am sitting here very depressed.  On treatment 14 weeks and 12 week pcr not good.  Never had a biopsy but will get one now. Will stay on tx until biopsy results known. Thanks.

[dutch_boy]

I agree completely with what has been said above.  My heart breaks for those like my dearest friend who has to make some really critical decisions about his tx immediately and doesn't even know the condition of his liver due to not having an intitial biopsy ordered for him. I had a biopsy which has helped me many times over make decisions about my tx and the course of actions I've taken. I have had confidence in making decisions based on my liver condition due to the biopsy results.

If this helps understand my friends specific situation I'll tell you what his doctor told him WHY he didn't order the biopsy initially.  My friend was with a partner 4 years ago who had Hep C.  He was frightened about getting the virus so he got tested and was negative.  Then 3 years ago (1 year after his negative results) he got tested again just to be sure he was still negative and it came back postitive with the VL in the millions (5 million)! This change of status took place within a year.  The doctor and my friend knew that exactly when he must have contracted Hep C due to the timing of when the test results changed from negative to positive. The doctor said the biopsy was not necessary as there probably wasn't substantial liver damage within the 3 years of having the virus.  BUT, in my opinion if his viral load exploded to 24 million which it has in the 3 years of having the virus why on earth wasn't it necessary to check the condition of the liver before starting treatment?!  This is a case in point where my freind is now grasping for any answers of how to proceed with his tx after his dissapointing 12 week PCR and learning his VL isn't decreasing enough at this point.  If he had known his liver condition the decisions he would make NOW would be so much easier to make.
Please anyone out there considering treating their Hep C virus please tell your doctor you insist on a biopsy before tx.  There are unexpected events during treatment and knowing your liver condition is critical to help YOU make better decisions when the road gets rough or takes a U-Turn!
Best to everyone out there fighting their battles. Scott

[dutch_boy]

Sorry you were led down the path of no biopsy initially done like so many others and even more sorry you have had dissapointing results on your 12 week PCR.  My question:  Can one get a biopsy after starting treatment as you said you will do?  I am ignorant if being on the medications will alter the biospy results but it makes sense to me that one could get the biopsy done anytime.  Please let me know if your doctor agreed to do the biopsy during your treatment as this would be a suggestion for my friend who is in the same boat as you presently.  The unfortunate thing is waiting for the biopsy and then waiting for the results when timing is critical.  I wish you the best of luck and hang in there....try not to let this get you down and you may have other options to consider once you know what stage of damage you do or don't have with your liver. You can more acurately make decisions once you know the results.
Let us know if having a biospy is a definate "go" for you.  Best to you susyq.
Scott

[cuteus]

I just read where there was a substantial number of miss diagnosis from the enzyme ratio and platelets readings that some drs are using. The folks were in more advanced damage than the bloodwork predicted.
Even the Fibroscan can't determine the grade of inflammation, so you might be a stage one according to the scan, but could be a grade 4 and not know it. Only the biopsy can tell you how advanced into the stage you are. A stage 2 might think they have plenty of time to wait, but a biopsy telling them they are s-2 gr 4, is a good persuasion not to. Until they perfect these devices, they are not a substitute.
Complications are rare with the bx, and it can tell you more than the grade, they do iron stains, test for AIH, etc. A better picture overall.

[Upbeat]

I can understand why the doctor would not order a biopsy. After only 3 years with the virus there would be no liver damage that would show up on biopsy. If it had been 20 years thats another story. The viral load has nothen to do with liver damage and is only used to predict the outcome of TX.

                                                    Ron

[NYgirl]

Even though it was only three years perhaps though there could be circumstances that caused a more severe liver damage? (Question) Suppose for example the person was a big drinker...wouldn't the alcohol magnify the progression?

Someone might not be completely honest with a doctor about drug/alcohol some other use and how would you REALLY know if in the three years there is minimal to no damage or if it is much worse?

Is that possible?  Or is YEARS the only predicter for damage?

That wouldn't make sense to me really - I would think that everyone should be bx'd just to make sure where they stand?

Unless it is just YEARS?

Also why do they make us get an ultrasound since really it didn't accurately tell me antyhing except I had no tumors or such and I need the bx to tell me the real results.  Had I been more willing to listen to the GOOD NEWS and live in ignorance (and my doctor not ordered the bx).....I would never have known until it was TOO LATE!

[MissMiss]

So, given the necessity of a BX, what numbers are the ones that bring concern?  I mean, a 1/1 isn't real bad but a 3-4/4 is real bad.  What about in between?  How do you really understand the numbers of a BX?

BTW, thanks all for concern awhile back.  I ended getting a quick shot of Neulasta and am doing better.  See the cancer doc today for procrit or neupigen.  Thanks all!

MissMiss

[FlGuy]

Til now I have been reluctant to take other meds while on TX, except hemo-directed stuff.   Lack of quality sleep, I think, has put me in a deficit situation.  The other day you mentioned Ambien.  Can you tell me what dosage you take (if they make more than one) and if you use it on nights respective of your shot night?  I find my worst sleeping nights are 2 or 3 nites after shot night.  Did you need to reconcile its 'liver friendliness'? Thanks Goof.

[johnisme]

If i remember right you went a total of 72 weeks? As you were a slow responder. How hard was it at 72 weeks to pull the plug and stop tx.? Or was your mind telling you maybe a couple more weeks or one more shot?

Take care....John

[scubadiver30]

Well, I don't know what to say. I have seen 3 doctors and none of them consider the bx necessary as yet. I got a Fibroscan reading as F0-F1. After that I got nervous after reading all your posts and since all of the drs over here in Spain were in "No BX" mode I talked to a doctor in Harvard (yes in Harvard). Thanks Jim for the tip. I gave him my story and asked if I could schedule a trip to Boston to have a bx done. He said that I shouldn't waste my time with it because the Fibroscan is pretty reliable at low levels of the disease. If I got an F0-F1 I should believe the dx (verbatim). I don't know, maybe in higher readings a bx is needed to compare. In addition to that the dr over here that handles the Fibro machine has a wide variety of patients (mostly non responders, IV drug users and coinfected with a lot of liver damage, and the machine has performed accurate readings everytime.
I want to get a BX asap but doctors have to have some kind of protocol and they should be able to tell with blood stats and ultrasounds. It does not make any sense that they're skipping bx just for the heck of it.

salu2
Diver

[cougareyes]

For the watchful waiting group, getting a bi-annual or even quarterly pcr might be a good idea. I don't want to bring up the age old debate about vl, yet I believe a consistant vl over a period of time(whether high or low); is an indicator as to how much damage is being done.
So if you had no or minimal liver damage, able to keep your lft within range, had no other manifestations that could not be controlled(as joint pain(?), etc.), and had a consistantly low vl: why would you treat with these drugs. One pcr means nothing. Just one man's thoughts....Peace

[jmjm530]

Coug,

Not sure if your question was addressed to me but since my name was in the box....  :)


I agree with your conclusion mostly. The not-so-popular point I made in another post is that for those who are going to treat anyway -- waiting for the viral load to drop has the advantage of hitting the virus when it's down. And high viral load being a neg pre-tx indicator of SVR isn't really an age old debate -- it's pretty much agreed by the medical community. Not to say there isn't ton's of anecdotal stories here and elsewhere where the opposite may be true.

How are you feeling these days btw...I'm having a pretty good week for a change.

-- Jim

[cougareyes]

Thanks for asking, I've pretty much just settled in for the ride. My bloods are all holding steady, on the low side but do-able. My bilirium(sp?) was high last week, kind of bothers me but I'll wait and see the next test results.
I've accepted my membership to the Zombies on Tx club for the next 6 months and I'll take one day at a time. I've been trying to distract myself from things that involve HCV, you know how the mental part starts to become the most challenging as time goes on.
BTW, you sound as if you're doing pretty good; as long as you're playing Dr. Frankenstein with your Riba, I'm not going to feel sorry for you anymore.     Peace

[NYgirl]

In addition to the biopsy you are going to need to get an eye exam and I also got a heart Esomething EET? EST? test.  Maybe you can ask the doctor and schedule these NOW so you dont have to wait longer...you sound just like I did I wanted to get started YESTERDAY kicking these things in the butt!

I tell you a LOT of it is ATTITUDE and you are going to do GREAT with the attitude you have.  Remember...drink a LOT of water!

(PS My doc didn't tell me about the eye exam and that held me up two weeks after I had my biopsy.  I was pretty mad I had to wait!)

[Tyree2005]

Thanks,

I did have the heart test which included a stress test.  I will make the appointment for my eye today.  Are you saying that your treatment was held up until you got your eye exam?  Is the eye exam just to compair if you start having eye problems.  I got a call today stating my meds were approved and will be shipped as soon as I give them the go ahead.  Thank God for this site and I do not have to go through this alone.
Thanks

[doll face]

John- Good luck on your journey through tx. Hopefully it will be a smooth ride. (some do get lucky enough) I'm with Cuteus on this one, we are both pretty strong advocates on extended tx, and seeing as you need to give this your best shot I would definately consider the option of going longer if necessary. First you need to get through the initial 12 weeks and see how you are responding. I wish you well.

Cuteus- I think that most of us probably felt like that. It would be hard NOT to. Can you believe that it has already been a year?

[NYgirl]

They held my treatment up a week or two until I could get my eyes checked.  Apparently there is a very rare condition or something that can cause blindness and they wanted to have a baseline reading BEFORE I started tx.

The opthamologist actually told me that I hadn't need to hold up the starting of medication at all for this test - but my doctor would not let me start until after it.

I was pretty angry because I wanted to get goin' on this right away.  But now honestly I realize it really didn't make any difference.  The 48 weeks are LONG.

Remember drink a lot of water and make sure you keep a REALLY good eye on your hemoglobin.  THAT is the ONE thing that could have forced me to quit, I fought threw it and it was hard but I am very glad I did.

[doll face]

I have been meaning to write to you and Tnhepguy for awhile now but have been so busy. I will make time this week but for now I can tell you, my son and grandson are just wonderful. He is getting out of the Navy at the end of Dec. and will be staying at my house for a month, can't wait.


Thyroid is still screwed up, can't get the meds adjusted till I can get up to Michigan, hopefully soon. Top teeth are done and look great, and the bottoms I will start after the Holidays.

So great to hear you and your son are doing well.

There are so many new people here now. I don't reconize most of the names, but it is good to see them helping each other out, and you're right they do seem to be alot more knowledgable than we were. LOL