Fibrosure-should I get one?

Last week my Dr. consult #3 ordered a Fibrosure test for me. My ins. co won't pay for it. Labcorp charges $300. for it. I am now on week 43 out of hopefully 72. My Fibroscan showed stage 1-2 in Nov. My biopsy 6 yrs. ago showed stage 1 grade 4. Dr. #2 stated I could be early cirrhosis, given the red palms and US's I have had. Does anyone think that this is a test worth doing? Why?  Thanks!

[Myown]

Hi!
I had the fibrosure before tx.
I may be wrong, but i thought someone said that the fibrosure can't be done while on tx (?)

I'm not sure though. Hopefully someone who knows for sure will chime in.

[jmjm530]

I have the same understanding as MyOwn. By all means call LabCorp to double-check, but do it soon so you can cancel out what is probably the wrong test while you're treating. There's another test called Fibrospect which I think can be done on treatment but not sure. Maybe HR will chime in on this. Sorry you're going through all this confusion but I can't believe he's upping your stage so much solely on the basis of the color of your palms. Frankly, with your biopsy and all, I think I'd lean more toward the Fibroscan result. I assume you've had a CatScan but not sure how accurate that is unless the cirrhosis is very pronounced.

All the best,

-- Jim

[sfbaygirl]

I have not had a cat/mri, I was surprise when the clone dr. #3 ordered a fibroscan. NO one else has ordered one thus far. Geez, i am in week 43 and now they order a fibroscan? Kind of crazy in my thinking, but so has this whole experience! The fibroscan seemed very realistic and was worth the trip etc. But why a fibrosure now? What would it show me? Yes, I was stage 1 grade 4 which is pretty high fibrosis, right? But after almost a year of tx, now they want one of these? My only guess is that because he is taking DR. #2' s report seriously, that he wants to find out what my fibrosis level is. I am not familiar with fibrosure, so I wonder how much better it will be than the US, fibroscan and biopsy I have had and if it is worth spending $300 on?

Thanks and apprieciate all speculations and opinions!

Linda

[jmjm530]

From LabCorp's web site:

"...HCV FIBROSURE

[MissMiss]

http://www.labcorp.com/pdf/08_HCV_Fibrosure_TR_1080.pdf

If the url came thru, you can go to the second page and read the reasons why you shouldn't have a fibrosure while on tx.  It makes perfect sense.

Hope things are otherwise smelling better, lol.

miss

[sfbaygirl]

So maybe I am on to Dr. #4? How many have you been to? Thanks for the opinion and reference to Labcorp. (Today I had to Tell the lab guy to check Labcorp for Fibrosure...he didn't know) I wondered as much...at this late date why is Dr. #3 asking for this? Dr#2, the agressive one didn't ask for this...so I wondered why. Amazing how the more we know, the more we have to question the tx and tests we are getting. You were really on the mark when you treated. You did your reasearch and had it down before anything bad happened to you. Thankfully nothing did, yeah, you had some different opinions from different docs and this had to be confusing and crazymaking, but your stayed with your nose forward, with a quest for what was the best and found what you needed. You are MY hero. You have given me so much info and reasons to rethink the approaches my dr's have taken, I have discovered that I have to be my own advocate in my own care. Reading studies, listening to others )like YOU) and gathering my own labs and reports are the most important thing I will do to achieve my SVR. Thanks Jim!

[jmjm530]

Thanks for the nice words. Truthfully, my personal research was sometimes only a week ahead of my treatment schedule, and sometimes behind. In other words, I focused in the beginning on how best to achieve RVR (double dosing, extra riba, etc) and only much later started going over the extended treatment studies to figure out how long to treat. That worked out because most of my time in the middle was trying and figure out the best way to deal with all my side effects.

I'm surprised I didn't screw more than I did, although I did end up in the ER from too much riba but hey, I was just learning :) I give a lot of credit to a medical that was not only knowledgeable and totally current, but allowed me to particpate in decisions.

As far as the doctor count is concerned -- and I'll leave out the three or four hepatologists I saw during the 30 years prior to treatment --  I only switched hepatologists once during treatment at week 1 but did see three others for office consults for one reason or another including my Fibroscan. I also corresponded with 3 or 4 others as well as a couple of researchers -- mostly at the beginning and end of treatment when important decisions had to be made such as whether to extend and for how long. Somehow it all worked out. Thankfully.

Unfortunately, the way things are it's a bumpy road this Hep C treatment, but worth the effort to try and get it right.

-- Jim

[mremeet]

I've had two fibrosure tests within one year of each other. One said that I was F0 and the other said I was F2, getting close to the F2-F3 range. A later biopsy showed an F1. Obviously there is no way I progressed from an F0 to an F2-3 in less than a year, plus neither fibrosure agreed with the biopsy (and I dont believe I'm F0 either). From my experience with fibrosure the data was highly scattered, and frankly I don't really trust it. It's supposedly pretty accurate at the extreme ends of the scale (i.e. F0 or F4), but is known to be fairly inaccurate for mid-level damage. This test uses various blood markers to estimate your liver damage including AST and ALT, which definitely move around (both up and down) in response IFN/riba treatment. So therefore, as cited by others, the test results would be invalid if the blood was sampled during treatment.

If you really want to know what's up with your liver. I'd get a biopsy from a good hospital from an experienced clinician (and no damned student doctors!). The biopsy sample size has to meet a certain criteria in length and width (don't recall offhand what they are) for maximum accuracy. Make sure the doctor knows about those dimensions and make sure a respected technician evaluates your slides. In fact, have a few technicians evaluate the slides and get an average reading. Then later also get another form of test, like maybe a fibroscan, and throw in a fibrosure too for good measure (well after stopping treatment). I've learned over time truly assessing and truly knowing what's going on with your liver is much easier said than done. There can be a lot of ambiguity with all of the tests, although I still believe the biopsy is best (for now). Nevertheless, the more "informational votes" you can collect using these various methods, the better idea you'll truly have where you stand.

[susan400]

My Dr. in Lakeland had me get the Fibrospect about a year ago.  It showed me in the cirrhosis range.  But, I haven't had a Fibroscan, as there aren't any Fibroscan's in my immediate area.  I think there's one in Miami.  Not sure though.  My last biopsy, (3 years ago in April) had me at the bridging fibrosis stage.  So, I'm not real sure if I'm thinking towards the cirrhosis category, etc.  If I continue on the progression pattern that I've done up to now, then, it will probably happen that way.  But, there's always hope that it won't.  I do know that with my treatments, so far, between my biopsy #1 to #2, I had no reversal of fibrosis score and between biopsy #2 to #3, I had no reversal.  That's why I said the above. Anyway, I hope to get the Fibroscan as the next thing instead of another biopsy...whenever it's necessary.  At what point do they ever suggest an endoscopy?

Susan

[sfbaygirl]

I had a fibroscan. I was K 6 (stage 1 or 2) I also have tested on the low end of the spectrum, so thanks for telling me about this....Why spend the $300 bucks! I would for a fibroscan though....I can't have a biopsy on tx either and of course they don't want to give me one after tx, unless I relapse. Didn't want to give me one before tx, cuz' they said I was treating anyway. If I only knew then, what I know now...

Miss; Thanks for the info on not getting one on tx. I had a hard time understanding why I needed one at this point. Perhaps Dr. # 3 is trying to be one of those agressive dr's I told him I wanted! LOL

Thanks for all the comments, I knew I could count on you all to give me some good info.