Aa
Biopsy ? / jmjm & others
i'm scheduled to have a bx in sept. i just found out that my doctor who is going to do it does not use unltasound guided bx. can someone explain what the difference is? is it more dangerous to have it not US guided? please explain the pros & cons. i was told by the docs nurse that if i wanted a "guided" bx then i would have to have a radiologist do the procedure. i'm a nervous wreck as it is about getting a bx and then to hear this about he does the bx "blind". i have been putting bx off until i found out that the FibroSCAN has me between a F1 & F2 and FibroSURE 10 months ago had me at F0! now i want the bx for the real answer. thanks for the help
Yeah, I mean what real difference does it make what stage you're at after SVR if there really isn't anything you can do about it anyway? Try unproven antifibrotics? An agressive herbal regimen? Worry? That said, the Fibroscan device might make it difficult to "close the chapter" for many of us SVRs since it potentially will be so readily available and easy. Still no-win as I see it. If the scan shows FO, I still feel the same. If it shows F4, do I really want to know?
I'm sure you're right about the post-tx bx. The question was just part of a general happy talk with the investigator at the point where everyone was up to calling it SVR. The more time that passes, the less interested I am in having more tests. Time to close the chapter on the horror story that was the last two years.
Thanks Myown...it's really a misnomer since I ended up in the control group of Prove 1...I'm not much of a lab-rat after all - just getting SOC. But I am getting poked and tested a lot! - LOL.
Yes I agree as far as Dr. A's tx decisions and YES you are 100% correct in that I would still be thinking of tx if I was stage O geno 1. LOL
Boy you really have me pegged. I guess most people do at this point, but you knew early on.
But anyhow I'm signing off for the night. I'm listening to some really good music and I want to relax and continue listening. Bye.
Talk to you again.
Boy you really have me pegged. I guess most people do at this point, but you knew early on.
But anyhow I'm signing off for the night. I'm listening to some really good music and I want to relax and continue listening. Bye.
Talk to you again.
I think the difference in advice was solely that you were geno 2 and Copy is geno 1. Apples and oranges in terms of treatment decisions.
MO -- if you were geno 1, Dr. A would have told you to wait, but you'd still be thinking about treating :)
-- Jim
MO -- if you were geno 1, Dr. A would have told you to wait, but you'd still be thinking about treating :)
-- Jim
you are a geno 1, if I remember correctly and I think maybe that would be why Dr. A told told you to wait, yet told me to tx - I guess cause geno 2 is easier to svr (hopefully I'll find that out),, Plus as Jim once said it seems women have a harder time dealing knowing we are carrying the virus whereas it is easier for men to just go on with their life and I'm sure a good doctor has us pegged after the first 2 minutes and I definitely fall into the category of "get this out of me now if possible - don't want to wait for new drugs if I don't have to,,But if I do not achieve SVR, God forbid - I will ride it out until I leave this life behind being I am stage O.
Personally, I'd take Dr. A's advice, and "wait" first, "Telaprevir trial", second. Unless of course you decide to do the biopsy and it turns out you're stage 3, which I think would surprise everyone. "Doing nothing" can sometimes be the most difficult decision of all, especially hanging out here with so many are treating and often treating successfully. Just remember, treatment often comes at a cost.
-- Jim
-- Jim
jm, to answer you question Dr A said for me to wait or get into a vertex trial. i told him my doc here in NJ did not think he was going to do the vertex trial even though he always has several trials going on. when i told dr A he said he would get me in a trial somewhere in my area.
thanks everyone , some great advice and info. i will let you know what i decide.
thanks everyone , some great advice and info. i will let you know what i decide.
Jim, my PCP does the blood drawing and the nurses do the injections. Alot of doctors around here send everyone to the labs. The last time I had an appointment he gave me the choice for my next lab as to whether I wanted to go to lab corp, but no matter what time I go there it is 'standing room only,' ,,,drives me crazy....sooooooooo crowded.
lab-rat.......I think you have the best name. I always wanted to tell you that and for some reason I always forgot to do so, but now I did.
lab-rat.......I think you have the best name. I always wanted to tell you that and for some reason I always forgot to do so, but now I did.
Regarding biopsy - I agree w/ mikesimon that it matter who reads the slides...I had a biopsy in 2003 which showed Stage 1 (which incidentally was ultrasound guided, done by a radiologist - they sedated me and it was quick and painless).
I had a 2nd biopsy exactly 3 years later - (done by the study dr. who is a professor of surgery & director of hepatology/liver transplants at a major teaching hospital - they gave me fentanyl - can't remember if there was an ultrasound - and again it was quick and painless). The 2nd biopsy as read by the pathologist showed Stage 3 w/ evolving cirrhosis. The study doctor disputed the pathologists reading and said I was more of a Stage 2 than 3. I'm not sure what any of this means, or who is right, but I'll take Stage 2 please!
I even had an x-ray that was misread after an accident...the ER diagnosed me with bruised ribs and sent me home. Three days later I recieved a call at work from the hospital - telling me to come in to be admitted right away. According to the chief radiologist, I had three broken ribs and a partially collapsed lung - go figure. That was an eye-opener for me...now I worry when I get any procedure done, who is really scrutinizing the results?
I'm sorry - I don't mean to add to any anxiety you may be having...the biopsy's themselves were quick and painless...but mikesimon is right about who reads the results. Good luck!!!
I had a 2nd biopsy exactly 3 years later - (done by the study dr. who is a professor of surgery & director of hepatology/liver transplants at a major teaching hospital - they gave me fentanyl - can't remember if there was an ultrasound - and again it was quick and painless). The 2nd biopsy as read by the pathologist showed Stage 3 w/ evolving cirrhosis. The study doctor disputed the pathologists reading and said I was more of a Stage 2 than 3. I'm not sure what any of this means, or who is right, but I'll take Stage 2 please!
I even had an x-ray that was misread after an accident...the ER diagnosed me with bruised ribs and sent me home. Three days later I recieved a call at work from the hospital - telling me to come in to be admitted right away. According to the chief radiologist, I had three broken ribs and a partially collapsed lung - go figure. That was an eye-opener for me...now I worry when I get any procedure done, who is really scrutinizing the results?
I'm sorry - I don't mean to add to any anxiety you may be having...the biopsy's themselves were quick and painless...but mikesimon is right about who reads the results. Good luck!!!
None of the hepatologists I consulted with recommended a post treatment biopsy. I'm sure I could get one but really have no desire. The virus is gone and other than curiosity, what is the point? Sometimes too much information can just screw your head up. Of course one might argue that one could make lifestyle changes or take antifibrotics is things have gotten worse. But lifestyle changes should be made anyway and antifibriotics don't seem ready for prime time yet. Most important, it could take a couple of years for fibrosis to regress post treatment, so what is the rush? That's why your doc prob told you to wait a little if you really wanted to know. Of course all this will probably change when my doc gets a Fibroscan in his office probably within the year. Like I say, really have no great desire to know my liver stage at this point but if he offers me the answer in a five minute office test, I probably will make a mistake and say "yes".
-- Jim
-- Jim
You state: "I have been putting bx off until i found out that the FibroSCAN has me between a F1 & F2 and FibroSURE 10 months ago had me at F0! now i want the bx for the real answer" which prompted you to ask: "Is it possible to progress one or two stages in less then a year if labs are normal for the most part?"
Fahhgettabout the fibrosure, I've become convinced it's a sh!te test over the last few years. I had a biopsy (ultrasound guided, which I recommend btw) back in 2001 and it showed F1 fibrosis. Then 4 years later I got my first fibrosure test, it showed F0 (which pleased me greatly, as you can imagine). Then about a year later I got another fibrosure test and all of a sudden it said I was F2 verging on an F3. In other words, according to fibrosure, I had progressed nearly 3 stages in less than a year - and that's after having a typical slow moving case of hcv for nearly a 1/4 century which previously had only progressed to an F1 as determined by an actual biopsy (graded by some hotshot clinician at that). I knew both test results couldn't be right, as I hadn't been eating poison mushrooms or gulping down carbon tetrachloride in the year between the F0 and the F2/F3. But still it had me worried, maybe the F0 was way off and the F2/F3 was closer to reality? It had been 5-6 years since my last biopsy and I have been infected for a couple decades now, maybe the fibrosis had really accelerated in recent years? I was getting pretty stressed about what was actually going on with the 'ole liver.
Anyway, along came the vertex trial and a recent biopsy was a requirement to enter the trial (they would not accept fibrosure results, the doc said they were too unreliable). So I got my biopsy and was really anxious about what the results were going to be. As it turned out the biopsy was graded exactly as the original one was graded way back in 2001 - no changes were observed and there was no evidence of fibrotic progression (i.e. still mild F1 damage). And there's a good level of confidence in the consistency of the 2001 and 2006 biopsies because they were both taken at the same hospital and were both graded by the same clinician. So things were apples to apples there which adds to the confidence in the consistency of the results. Here's a quick summary of the results for clarity:
2001: Biopsy --> F1
2005: Fibrosure --> F0
2006: Fibrosure --> F2/F3
2006: Biopsy --> F1
In conclusion it seems very obvious to me that the fibrosure test is very unreliable. It's known for being relatively inaccurate at mid levels of fibrosis, but relatively accurate with minimal fibrosis. I'm not buying it, first it said F0, when I know I have at least a little fibrosis. Then it says I'm almost pre-cirrhotic just a year later, only to find out that same year from an actual biopsy I had remained at F1 (in a range where the fibrosure test is supposed to be accurate). Baloney, the test sucks, do NOT trust it. I don't know how reliable the fibro-jiggle thing is, but if someone like HR was running the machine I'd have a darned sight more confidence in those results than the fibrosure. But I wouldn't settle for anything less than a good biopsy graded by a real expert. It sounds based on the results you do have that you almost certainly do not have anything close to cirrhosis. So I'd just put it on cruise control and not get all worked up about it (like I did). Just get your biopsy knocked out ASAP, have it graded by a pro, and put the matter to rest once and for all.
Best of luck...
PS>> Oh yeah, NO STUDENT DOCTORS on the sampling needle! Premeds too, or the sky might open up on you. Hordes of locusts. The gnashing of teeth, the wringing of hands, the wailing of women. That sorta stuff. ;-)
Fahhgettabout the fibrosure, I've become convinced it's a sh!te test over the last few years. I had a biopsy (ultrasound guided, which I recommend btw) back in 2001 and it showed F1 fibrosis. Then 4 years later I got my first fibrosure test, it showed F0 (which pleased me greatly, as you can imagine). Then about a year later I got another fibrosure test and all of a sudden it said I was F2 verging on an F3. In other words, according to fibrosure, I had progressed nearly 3 stages in less than a year - and that's after having a typical slow moving case of hcv for nearly a 1/4 century which previously had only progressed to an F1 as determined by an actual biopsy (graded by some hotshot clinician at that). I knew both test results couldn't be right, as I hadn't been eating poison mushrooms or gulping down carbon tetrachloride in the year between the F0 and the F2/F3. But still it had me worried, maybe the F0 was way off and the F2/F3 was closer to reality? It had been 5-6 years since my last biopsy and I have been infected for a couple decades now, maybe the fibrosis had really accelerated in recent years? I was getting pretty stressed about what was actually going on with the 'ole liver.
Anyway, along came the vertex trial and a recent biopsy was a requirement to enter the trial (they would not accept fibrosure results, the doc said they were too unreliable). So I got my biopsy and was really anxious about what the results were going to be. As it turned out the biopsy was graded exactly as the original one was graded way back in 2001 - no changes were observed and there was no evidence of fibrotic progression (i.e. still mild F1 damage). And there's a good level of confidence in the consistency of the 2001 and 2006 biopsies because they were both taken at the same hospital and were both graded by the same clinician. So things were apples to apples there which adds to the confidence in the consistency of the results. Here's a quick summary of the results for clarity:
2001: Biopsy --> F1
2005: Fibrosure --> F0
2006: Fibrosure --> F2/F3
2006: Biopsy --> F1
In conclusion it seems very obvious to me that the fibrosure test is very unreliable. It's known for being relatively inaccurate at mid levels of fibrosis, but relatively accurate with minimal fibrosis. I'm not buying it, first it said F0, when I know I have at least a little fibrosis. Then it says I'm almost pre-cirrhotic just a year later, only to find out that same year from an actual biopsy I had remained at F1 (in a range where the fibrosure test is supposed to be accurate). Baloney, the test sucks, do NOT trust it. I don't know how reliable the fibro-jiggle thing is, but if someone like HR was running the machine I'd have a darned sight more confidence in those results than the fibrosure. But I wouldn't settle for anything less than a good biopsy graded by a real expert. It sounds based on the results you do have that you almost certainly do not have anything close to cirrhosis. So I'd just put it on cruise control and not get all worked up about it (like I did). Just get your biopsy knocked out ASAP, have it graded by a pro, and put the matter to rest once and for all.
Best of luck...
PS>> Oh yeah, NO STUDENT DOCTORS on the sampling needle! Premeds too, or the sky might open up on you. Hordes of locusts. The gnashing of teeth, the wringing of hands, the wailing of women. That sorta stuff. ;-)
On a related bx point:
I asked the hepatologist who is running my Prove 1 study for his recommendation on a follow-up bx to determine if my histology was improving after a decent period of SVR. His two-part response was:
- He counsels against bx other than after a confirmed HCV diagnosis and before starting treatment.
- If I really wanted to know, then his advice was to wait at least one year, and preferably two years.
His message was that regression in fibrosis has been observed, but the time rate of change is slow. I guess the compelling point here is "it took 20+ years to get to Stage 3, so don't expect to be back at Stage 1 or better in a year or so".
Anyone have more data on this issue??
I asked the hepatologist who is running my Prove 1 study for his recommendation on a follow-up bx to determine if my histology was improving after a decent period of SVR. His two-part response was:
- He counsels against bx other than after a confirmed HCV diagnosis and before starting treatment.
- If I really wanted to know, then his advice was to wait at least one year, and preferably two years.
His message was that regression in fibrosis has been observed, but the time rate of change is slow. I guess the compelling point here is "it took 20+ years to get to Stage 3, so don't expect to be back at Stage 1 or better in a year or so".
Anyone have more data on this issue??
Copy: is it possible to progress one or two stages in less then a year if labs are normal for the most part?
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I would go with Dr. A's opinion, which I believe is that given your stats and testing, that is not the case. Is it *possible* -- I guess anything is possible, but more likely that one or both of the tests were off a little -- and probably the Fibrosure. You didn't answer my question as to whether Dr. A. thought you should treat now or not?
MO: As far as blood drawing or injections I feel a nurse does it much better. every doctor
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The best injections I ever got were from a doctor but can't remember one every taking blood one way or another. There's a reason I go to Quest for blood draws -- as opposed to a NP -- and that's because in general they do a much better job for the simple reason that they draw blood all day long. I'm certainly not against guided biopsy's, but I say go with the most experienced person and let them do what they are comfortable with.
FL: When it comes to the bx, both he and I know to go to guy with the expereince - the radiologist, in my area.
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I think that is my point also. Go with the experience. Radiologist in your case.
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I would go with Dr. A's opinion, which I believe is that given your stats and testing, that is not the case. Is it *possible* -- I guess anything is possible, but more likely that one or both of the tests were off a little -- and probably the Fibrosure. You didn't answer my question as to whether Dr. A. thought you should treat now or not?
MO: As far as blood drawing or injections I feel a nurse does it much better. every doctor
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The best injections I ever got were from a doctor but can't remember one every taking blood one way or another. There's a reason I go to Quest for blood draws -- as opposed to a NP -- and that's because in general they do a much better job for the simple reason that they draw blood all day long. I'm certainly not against guided biopsy's, but I say go with the most experienced person and let them do what they are comfortable with.
FL: When it comes to the bx, both he and I know to go to guy with the expereince - the radiologist, in my area.
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I think that is my point also. Go with the experience. Radiologist in your case.
Radiologists are MD's..
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Well that shows how little I know. I thought they were just under the wire of being a doctor. Thanks for the info.
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Well that shows how little I know. I thought they were just under the wire of being a doctor. Thanks for the info.
Radiologists are MD's.. My tx doc (a GI) is a master with the scopes. He can do a light show with his scopes that would be the envy of the Hayden Planetarium and catch a fly with the tweezer attachement like a Jedi. When it comes to the bx, both he and I know to go to guy with the expereince - the radiologist, in my area.
Dr A did put some weight on the F-sure test but did say it relied on one blood maker to much and sometimes can by off a stage.
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When I went to Dr.A, he told me that my "0" score from fibrosure test was more reliable than a bx. Told me I don't need a bx. Maybe if I was planning a bx and had the scan and the score of HIS scan came out different he would have given me the same answer as he gave you. Or possibly his opinion has changed since I saw him. A bx scares me because there is always risk, but a retired Hep doc told me that he did at least 1,000 or maybe he said 'THOUSANDS -with an 'S' can't remember, but anyhow he said he never once ran into a problem.
As far as not getting a guided bx,,,,,, no way Jose. I don't care what anyone says- thats nuts. I wouldn't let someone cut my hair with a blindfold on even though they cut 100's of people and thats just hair - so why that I would ever let someone take one snip out of my LIVER with a blind fold so to speak??. My question to the doctor would be " okay you don't want to use an Ultra sound,,,,what if you were a doctor in Europe and you took 3 samples - would you then use an Ultra sound or depend only on your nose like a rescue dog or whatever method you use on people (other than your MOMMA - she gets the guided I would GUESS)
Copy - do what YOU feel is best, really. Don't do something if you feel deep down that its not something you want to do. I just don't understand why a doctor wouldn't use an Ultra sound and if I was in your shoes and felt I had to get the ultra sound to feel comfortable, I would let the Radiologist do it. As far as blood drawing or injections I feel a nurse does it much better. every doctor that ever stuck me with a needle hurt me - yet 99% of the times a nurse used a needle - I never felt it.So just because a Radiologist isn't the doctor doesn't mean he is not as good at doing the procedure. He may have done more than the doctor -who knows?
Either way I wish you the best and I hope you feel confident and peace in whatever you decide.
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When I went to Dr.A, he told me that my "0" score from fibrosure test was more reliable than a bx. Told me I don't need a bx. Maybe if I was planning a bx and had the scan and the score of HIS scan came out different he would have given me the same answer as he gave you. Or possibly his opinion has changed since I saw him. A bx scares me because there is always risk, but a retired Hep doc told me that he did at least 1,000 or maybe he said 'THOUSANDS -with an 'S' can't remember, but anyhow he said he never once ran into a problem.
As far as not getting a guided bx,,,,,, no way Jose. I don't care what anyone says- thats nuts. I wouldn't let someone cut my hair with a blindfold on even though they cut 100's of people and thats just hair - so why that I would ever let someone take one snip out of my LIVER with a blind fold so to speak??. My question to the doctor would be " okay you don't want to use an Ultra sound,,,,what if you were a doctor in Europe and you took 3 samples - would you then use an Ultra sound or depend only on your nose like a rescue dog or whatever method you use on people (other than your MOMMA - she gets the guided I would GUESS)
Copy - do what YOU feel is best, really. Don't do something if you feel deep down that its not something you want to do. I just don't understand why a doctor wouldn't use an Ultra sound and if I was in your shoes and felt I had to get the ultra sound to feel comfortable, I would let the Radiologist do it. As far as blood drawing or injections I feel a nurse does it much better. every doctor that ever stuck me with a needle hurt me - yet 99% of the times a nurse used a needle - I never felt it.So just because a Radiologist isn't the doctor doesn't mean he is not as good at doing the procedure. He may have done more than the doctor -who knows?
Either way I wish you the best and I hope you feel confident and peace in whatever you decide.
thanks for all the replies. is it possible to progress one or two stages in less then a year if labs are normal for the most part? i would think & hope if someone was progressing that fast there would be some indication? thanks again
one more thing to consider, though saying it here prob won't go over really well, but I think in weighing decisions like these, it's good to factor everything in to make a good decision...there is a small risk in biopsy to consider as well, though very small...most everyone comes out okay, the vast majority...but there are a few who have had problems, a friend of mine had to get a vein cauterized, and they did it really fast and really well and he ended up fine, but I mean, this procedure isn't COMPLETELY without risk...if you've had both of these procedures I think it gives you a pretty good indication of where you are at, most patients aren't able to have the procedures you've already had to make a diagnosis of liver fibrosis...I'm just giving you some other facts to consider, of course if it makes sense to you and your docs, by all means do what you feel is best for your own satisfaction...
As mentioned in my previous post, I'm not sure what I'd do in your position re the biopsy. My head would tell me probably not needed because of Fibroscan and Fibrosure results, but my penchant for wanting more information -- and the knowledge that I wouldn't treat until at least stage 3 -- might make me do the biospy. I'd say it would be 60-40 against me doing the biopsy given the existance of Fibroscan. As to when I would treat, yes, I would wait until F3, which I did not in a hypothetical, but in terms of my own treatment decision. In fact, I waited three years after my biopsy showed F3 which was mistankenly explained to me as between stage 3 and stage 4. Not that I'm recommending anyone wait that long. Maybe you're already mentione it, but what did Dr. A. have to say in terms of whether you should treat now or wait? Again, I'm with Dr. A in that your Fibrosure was probably off and your Fibrosis is not progressing that fast.
-- Jim
-- Jim
my dr is doing by bx aug 31 iam kinda looking forward to it a little anxious but ready.. I hope it dont hurt..
I'm with Jim on this, though I don't have time to read the whole thread, if I were you, I wouldn't do a biopsy...you can average it out nicely from what you have had, and you've got low liver damage from what I remember (my memory can go in seconds! lol) unless youre doing a trial and they require one cause fibroscan hasn't been FDA approved yet, (and it will soon from what I've read) or there are indications that you have fatty liver (fibro can't measure that) fibroscan has gotten mostly very good reviews from all I've seen...anyway, that's my two cents, and just my take, being no expert....(just to add, my own doc is a big fibroscan backer, and he's the head of the liver dept here at Cedar Sanai)
just a few more questions to ask you. you have me puzzled about the bx, i may be wrong but i thought you always were "pro" bx and suggested people to get them? so you are saying you may have relied on the fibroscan result if in my position? may i ask when you would treat if you were in my shoes? would you wait until F3. and last question, have you ever heard of someone progressing 2 stages in less then a year if they live right, no alcohol, etc.?
PS, i will get another F-sure soon.
PS, i will get another F-sure soon.
they automatically set me up in the cat scan room for mine. it was reassuring as i could see the picture of my insides on the monitor before they did it. it probably costs a lot more but i dont know for sure..i think total was about $3000, my cost after good insurance was about $1500.
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