Biopsy ? / jmjm & others

[copyman]

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

[jmjm530]

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

[copyman]

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.

[Myown]

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]

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!!!

[jmjm530]

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

[mremeet]

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.  ;-)