Fibroscan Score & Cirrhosis

Well Hubby had his Fibroscan today in Boston and doc confirmed he has Cirrhosis, due to scan, ultrasound, endoscopy results (non bleeding varices) enlarged spleen 19.3 cm and low platelets 75,000.  Fibroscan score was 18.8, I was shocked. I dont think I have heard a higher number here, have any of you?  Doc says he has seen it as high as 75. Biopsy showed stage 2, so it was wrong. Keep that in mind folks.

Anyway he said he felt he is very healthy, healthy body weight, physically active, no medical issues at all, no meds except tx and low viral load to start, 60,000. He thinks he will do just fine. Says he has strong immune system (viral load was <615 for two years after being dx). He says he is resistant to the virus already and expects him to be UND at week 4, I hope.  We are just hoping tx works, sounds like it must at this point.

He is on week 3 (GT3A) of week 48 and feels great so far,
2 weeks labs shows he doing good platelets still good so far.

Doc says I should extend to 36 weeks, but no more,  as I was <615 at week 4 but not UND until week 12. I too am GT3A and on week 17. So now I know what to do.

We have learned to look at the whole picture not just one test.

[copyman]

sorry about your hubbys news. just goes to show that the biopsy is not as great as people say. i guess docs know this and are starting to use other tests to assess liver damage. if the bx is done right with samples from 3 parts of liver and long enough specimens then it is probably still the best test. if not then i would want other tests along with it, fibroscan, fibrosure, etc. i think in a few years the bx will be a thing of the past, non-invasive tests will prevail.

[Myown]

Sorry to hear about your hubby,,but he does sound very very healthy considering...Thats great!! Wow he does have a super-charged immune system! Dr. A is a doll, isn't he? So nice and DR T that works with him is great too.

And so he wants you to extend to 36? Well, he would know. Thats interesting though. I always read 24,48 or 72. Maybe I missed reading the 36 ,,,or this is something new that they have now found. But at least you know you can trust what Dr A says.

I pray you both get a big svr!

Very interesting that the "Gold Standard" is not "Good as Gold." It's only logic that it couldn't be with the tiny piece they take from the liver.

[Cindy10]

Thanks guys, that biopsy just bugs me. They just kept saying stage 2 so he delayed tx for three years. It wasnt until Oct when they did the ultrasound they figured it out. Although they said they suspected it prior. Whatever!*&!.

Yeah Myown, he is a doll. I was very comfortatble with them both and Hubby hit it off with both of them right away.

We were able to ask alot of questions and received honest answers, which to date we have not from other doctors.  

All and all it was a good day, knowledge is power.
And like I always say "It is what it is".

As far as me extending, he just wants me to have the best chance. I was already thinking 36 weeks.

[Pdilly]

So sorry to hear about your husband but glad he found out.  What made him decide to have more tests other than the biopsy?

[wyntre9]

I posted this commented on foofighters thread before reading this and my question seems equally relevant here so I'm gonna copy it.

As I read through the discrepencies between your biopsy results and bloodwork results and the confusion it has caused, it made me wonder about a similar difference in my pre-tx tests.

Before my biopsy, bloodwork from my Primary Care had come back as Stage F4 - Cirrhosis and Grade A1-A2, minimal to moderate necroinflam activity.

I guess that's why he was so insistent I follow-up with a specialist.

But the biopsy results showed Stage 1, grade 1 damage.

My PCP was relieved, saying the results were much better than the bloodwork had indicated.

Does anyone know if it's common for there to be such big differences between bloodwork and biopsy labs?

(I'm now on tx - 48 weeks - shot 8 is Friday)

[Myown]

I guess he came to the 36 because of being clear from week 12, right? That makes sense. It's sorta like tx for 24 weeks but starting without any virus in your blood. That sounds like you have a good chance!

That office is the best office I have been to for hep consults and believe me I have knocked on a lot of doors. They really seem to care and that's what makes it such a good experience, plus with Dr. A being the Hepititus guru that he is gives you that extra confidence in what he says.

We all just have to hang in there and try to get through this. Others have, so that helps to know and make it a little bit easier.

The waiting for lab results drives me up a wall though. Can't stand it. I know everyone gets nutty with the wait, it definitely isn't fun. see ya later!

[Myown]

Before my biopsy, bloodwork from my Primary Care had come back as Stage F4 - Cirrhosis and Grade A1-A2, minimal to moderate necroinflam activity.

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Are you saying the fibrosure test showed that?

This gets confusing,,maybe Jim, Rev,GO, Mikesimon  or someone else knowledgeable will chime in

[Cindy10]

Pdilly, he was going to the doctors on a regular basis, doing whatever test they suggested, biopsy 12/04, two ultrasounds, 2 endoscopies, CT scan and blood work. It just took them 3 years to finish the tests or retest, as they were thinking stage 2, just monitor.

wyntre9, All I can say is based on what we know now, the labs where more acurate than the biopsy. In fact they kept saying the labs dont match the biopsy, but biopsy
accurate. Now they say it must have been a sampling error. You need to look at all your test results.

[wyntre9]

Yes.  That's the name of the test;  HCV Fibrosure Results.

My gastro had told me he wouldn't rely on those tests and insisted I go for ultrasound, endoscopy, biopsy before he diagnosed me.

So does a biopsy automatically trump everything else?  That's the impression I got but reading Foof's thread made me wonder.

I should have raised these questions before starting TX but I hadn't yet found the forum and besides, I didn't know what questions to ask.

[wyntre9]

"All I can say is based on what we know now, the labs where more acurate than the biopsy. In fact they kept saying the labs don't match the biopsy, but biopsy
accurate. Now they say it must have been a sampling error."

Sorry, I'm really dense tonight.  What did they say was the sampling error?  The biopsy or the BW?

[Pdilly]

I agree.... There have been a few that the bx's have not been right.  My doctor only did one bx sample and mine cambe back  s 2-3   g 2-3.  I had red palms that cleared up immediatly after starting tx.  I know that is a sign of far worse things.   Maybe in future tests I can suggest the Fibroscan.  I just want to be sure now instead of being surprised later.  Cindy's husbands doctor sounds like he is pretty thorough.  

[Cindy10]

The sampling error was the biopsy, they took three samples. The way it was explained to me, was sometimes you can have alot of fibrosis but a part of the liver that is still good, and if the sample came from that part, you would not get acurate result.

[Cindy10]

Yes, that how he figured the 36 weeks, which how I was figuring it as well. 12 Und + SOC 24 = 36 weeks.
Now I have to convince my regular doc, he is thinking
48 weeks. But I trust Dr. A.

[wyntre9]

What's the difference between a Fibroscan and a Fibrosure Test?  DO you know?

And here I was just starting to feel like I was getting a handle on everything.

The more you know the more you realize you have to learn.

[Cindy10]

I am not sure to tell the truth and I would not even guess. I hope someone comes along to answer that one.

I know how you feel, the more we learn, the more we need to learn ;-)

[foofighter]

The difference between stage 2 and cirrhosis is great and my liver doc explained to me the limitations of a biopsy many, many times but still that's a large difference.

______________________________________________________

Took the words right out of my mouth!

Except for the part about a doctor explaining something to you many times. That hasn't happened to me yet! Had to learn about that from you guys.

[Myown]

Fibroscan isn't a blood test. Its non invasive type test. I don't know what the machine looks like, but apparently it seems it will someday replace the needle bx. Dr.A has the fibroscan up by him.  I believe HR performs the fibroscan also in California. Who else has a fibroscan I don't know, but it seems on this coast, people go up to Boston. Whether or not there is one in the south, I don't know. I would guess there is, but honestly don't know.

maybe your best bet is to make an appointment with Dr. A. Maybe Cindy can tell you how to get an fibroscan scheduled with Dr. A. Everyone doesn't get one, but maybe due to the descrepancy in your test scores, you could be a candidate. I didn't have one when I went up, so I can't help you with that. I went for a consult and tx plan only.

[wyntre9]

Thanks.

I don't want to have another test - just wanted to know what it was so I can try to keep the terminology straight.  (hahahah)

As ususal, I'm doing everything a**-backwards.  Should have found out all this stuff before but didn't know what I didn't know, know-what-i-mean?

Also, I guess you have to take a leap of faith and trust in your Dr. (which I do -TG)

[jboyhk]

I am still very confused at an earlier statement and am suprised noone else picked it up.

Does anybody else know anyone who can have VL <615 and have HepC WITHOUT being on active treatment?

Something does not seem right with that statement.

Are you sure you read the test properly? Maybe you mistook the Reference Range as the Viral Load.

[Cindy10]

Wyntre9 - I know the Fibroscan is kind of like an ultrasound. There is a wand type thing), they put it between the rib cage and it send currents which helps them to read the density of the liver, or so to speak.
It is not invasive and very acurate they say.

jboyhk - I dont know how it happened. When he was dx a few years ago the quantative test showed <615 than they did a qualitative (which went down to 10) and it showed detected. He stayed this way a couple years (without tx). The doctor said he had the virus but his immune system was very resistant to it. Last year it went up to 10,000 and in 12/06 it went to 60,000 the highest he ever had. The doc says it does happen. They originally thought he had cleared the virus on his own. Thats why they say if <615 does not mean UND. Anyway this is why the doctor think he should respond to tx. I hope.

Rev- Thanks for the thoughts, I agree one day they figure all this out and give acurate dx and hopefully a cure to follow.

[foofighter]

So far I have had the biopsy, bloodwork and a CT. My diagnosis is based on those three tests and we are throwing out the biopsy, so that means two tests. My low platelets were 111 x 10E3/ul (140-415 limits). My spleen was negative.

Cindy, to get to your hubbies diagnosis you listed: scan, ultrasound, endoscopy results (non bleeding varices) enlarged spleen 19.3 cm and low platelets 75,000. Fibroscan score was 18.8.  

A lot of stuff to to look at to come up with a diagnosis. Which makes sense to me. My question is, did you not accept a firm diagnosis of cirrhosis until the Fibroscan?  Was there a CT or was the scan listed first the Fibroscan?  Did you do all these tests because bloodwork indicated the biopsy was incorrect?

HR, does a radiologist's CT summary stating, Nodular liver surface, suggesting cirrhosis, make it a done deal? Or like the biopsy, can it be wrong even with labs pointing in that direction? I just had an ultrasound to check a lesion/HCC so maybe it will also show severity of fibrosis and give me/my NP one more test to confirm. Can the ultrasound stage fibrosis?

I just want to make sure I have done everything I can to get the right diagnosis and if there is a chance I am not cirrhotic, I will do whatever I have to. I hate being out of the running for any clinical trails. Are there any Fibroscans in the midwest? Or do you go for some kind of fancy biopsy to get the gold standard diagnosis?

[jmjm530]

You're in excellent hands in Boston. Hope everything goes well.

-- Jim


Rev,

I understand what you say -- two stages is a lot --  but have heard of biopy being off that much due to absolute sample size, relative sample size and pathologist bias (sometimes a nice word for pathologist error). From what I understand, the dx in Cindy's husband's case was made based on multiple factors that all suggested stage 4, rather than stage 2. Unfortunatly, a lot of us aren't as lucky to get evaluated not only by a doctor who has Fibroscan, but by a world-class clinician who can connect all the dots.

[OceanLiver]

Hi, My sister is in Boston and would like to get a fibroscan.  Is it possible to get one without being in the trial?  She has platelett issues and it would be better if she did not have to have another biopsy.  Is Dr. A taking new patients.     Things look good for yourself and your husband, other than both having to deal with this virus.  But I am sure you will grow even closer and more understanding as you clear..
Thanks for your help,  Ocean  

[wyntre9]

Yeah, it's all so d***ed complicated.

Thanks for answering and BOL to you and your hubby.

[Hepatitis Researcher]

Ct and ultrasound normally cannot diagnose early cirrhosis - also called micronodular cirrhosis - since the macroscopic appearance of the liver is not yet changed. Some enlargement might ber present and can be seen, but inflammation can cause that enlargment as well, with no cirrhosis. When the regenerative processes becomes so strong that the liver starts growing local macroscopic nodules then first its surface loses the normal smooth appearance. At this stage a surface ultrasound probe starts to see that irregularity as well as the CT or MRI. Later the inner structure looks inhomogenously as well ( "echotexture") But again, these are fairly advanced stages where the liver has started its last line of defense : macronodular regeneration.

The fibroscan analyzes a few hundred times the amount of tissue than the biopsy does, so sample errors are quite excluded and you repeat it as many times as you see necessary as you proceed with the exam, depending on the quality of the scanning images that you obtain, that will tell you how reliable any individual shot really was in terms of the cleanliness of the physics that prevailed in that individual shot. I explained the details before. A well done and consistent fibroscan result is extremely convincing with respect to the amount of fibers that are, on the average, in the liver sample examined.  A fibroscan of 18 Kilopascal with good quality and consistency is a clear dignosis of cirrhosis. There is no other explanation why the liver should be so stiff. Stiffness is what the fibroscan measures in a direct physical way. It is not electric as some mentioned, it is an elastic shock wave generated at the surface of the liver by a mechanical probe hammering onto the liver surface from between the ribs, followed by rapid ultrasound pulses that follow the movement of this shock wave through the liver tissue to a depth of 80mm. The progression of this wave is translated into a two dimensional time/depth image. This way the speed of that wave can be precisely determined and the quality of the wave itself assessed. Its speed is directly dependent on the stiffness of the liver, that in turn is directly dependent on the amount of collagen fibers in it - that is the fibrosis.

Altogether, considering the importance of knowing the overall status combined with the difficulty of knowing whats is truly inside, all the critical tests should be combined if possible to give a clear and convincing picture of the reality in each case. Spleen size , Ultrasound, Endoscopy, blood test - platelets etc, blood fibrotests , properly done Fibroscan and ideally guided biopsy all together should give the qualified specialist a decent assessment where a patients stands on the long long road from stage zero to advanced cirrhosis.

[Cindy10]

He did have a ct scan. His original dx of Cirrhosis was due to the ultrasound. The doctor later said he had suspected (due to all the test) that the biopsy was wrong but wanted to follow up with additional tests to confirm. I was disappointed originally as I thought the delay in tx progressed the damage. However Dr A said yesterday that the cirrhosis is not something new and based on other test and low platelets for a few years that he believes he has had this for a while.

He confirmed everything our Doctor has said including tx protocol so he said he would not change the current stratagy.  

The goal is to rid the virus and stop the progression.

[Cindy10]

She can contact Dr. A for an appt. We were new and he took us. Although the appt was made months ago, takes a while to get in there. So we kept our current doctor but made the appt as I really wanted to hear from such a expert in HCV, more as a second opinion (but from the best). As far as the fibroscan, we requested it due the dx and biopsy error and Dr. A agreed, he wanted to do it as well. Not sure if he does it with all patients but if there is a reason I'm sure he will.  

Have your sister call Beth Isreal to make an appt.

I trust this Doctor without a doubt and with utmost respect.

Best us luck to you both!

[Myown]

You said:
I don't want to have another test - just wanted to know what it was so I can try to keep the terminology straight. (hahahah)
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lol  haha! you're funny!!!

[susan400]

I'm not positive, but I think that there is a Fibroscan machine at the Univ. of Miami where Dr. Schiffman is.  FLGuy would probably know.

Susan