No Fibroscan - Jim Help

[foofighter]

Coordinator from St. Louis called back. Trial is in a different stage nationwide, now requiring biopsy within 6 weeks. Insurance won't pay.

I did go pick up records from my last office visit (Feb. 07) so here goes. Jim read between the lines for me: NP notes read:

At a previous appointment it was clarified that she had progressed to cirrhosis. Original biopsy found stage 2 changes but in light of a low platelet count, there was a suspicion for more advanced liver disease. CT of the abdoment found evidence of portal collateral systemic changes that confirm cirrhosis. The patient has well-compensated disease and strong hepatic synthesis. (Original July 06 CT report said: cirrhotic-appearing liver. 0.9 low dense lesion in right hepatic lobe. No definite enhancing lesions identifified. Portal vein is patent. Negative spleen. A few borderline prominent upper quadrant lymph nodes.) How did he get confirm out of that?

He checked for HCC at this visit. Ultrasound: A cirrhotic liver is demonstrated. Spleen bordline enlarged at 12 cm. No ascites, no neoplasm noted. AFP: result 5 ng/ml (range 0-6) (Keep in mind the Ultrasound tech started with the idea I was cirrhotic.)

Fast forward to May 5, 07. The trial I was trying to get into has my doctor in charge of it (I never see him, though, just the NP). For whatever reason, my Doctor looked me in the eye at "go time" in the trial coordinator's office (796) and after having my July 06 biopsy re-read, he says to me, your biopsy is a 2-1. I started to protest, because I was stunned to hear this, blurting out "What about all the other tests?" He almost cut me off, saying the biopsy is the gold standard. I said "In that case I am waiting to treat and beat it out of there. I took the summer off! Only checked in here once and while and didn't worry. But in the back of my mind...

Here are my thoughts:

Maybe he was actually trying to help me get in to the trial by leaving out results other than biopsy and was wishing I would shut up and not tip off the coordinator. Don't ask, don't tell.

He didn't look at my file first.

He is right. Just because it is cirrhotic-appearing and what does "is demonstrated mean? Maybe he thinks the other guys made a mistake?

There it is. Sorry it is so long?  Just like everyone else, II only want to do this one time!

[jmjm530]

First, sorry the Firbroscan trial didn't work out. I wasn't clear from your post if you could still have one privately if you paid. If so, that is a possiblity. Another is to post to one of our members  "Forseegood" here, and see if she can connect you with "HR" who has his own Fibroscan machine outside of the trials. That however would mean travel to CA if HR was willing.

Bottom line as I understand it is that you want to find out how much liver damage you have to make an intelligent choice whether or not to treat. This makes sense.

It sounds like from the above that the nurse thinks you are stage 4 and the doctor is saying that you are stage 2, suggesting that needle biopsy trumps the other tests. I think you have to weight their opinons based on your assessment of their credentials and expertise, which usually means go with the doctor, especially if he has a recent biopsy to back up his diagnosis.

That said, personally I'd seek another opinion at this point, especially if I couldn't get a Firbroscan. Don't know if your doc is a hepatologist (liver specialist) or not. But in any event, I'd collect your biopsy slides, blood tests, ultrasound reports, Cat Scan report, etc. and bring them to the best hepatologist in your area -- or outside your area if willing to travel. There's a significant difference between stage 2 and stage 4 and I don't see how you can make an informed decision until you have a better understanding of where you stand.

All  the best,

-- Jim

[jmjm530]

I re-read your post again more carefully. It sounds like you don't have complete confidence that your doc took the time to carefully read you file. Sometimes these fellows can tell everything at a glance --- they are that good -- but we don't know if that's the case. Bottom line is that you don't have confidence that you are receiving the right amount of attention from your doc in dx your liver condition. And frankly, based on your story, I'd feel the same way. I think you def owe it to yourself to get more confortable with your diagnosis. So again, I'd recommend a second opinion from a good hepatologist. If you can get a Fibroscan as well -- from HR or othrerwise -- that would also be helpful. Don't know exactly where you live but if you don't mind posting the general area, maybe someone here can point you to a good doc.

-- Jim

[foofighter]

I guess I didn't come right out and ask if I could pay for the biopsy, but after chatting with coordinator about why I want to do it, he made it sound like a dead end. Maybe they can't tell you results in this phase, I was so bummed I wasn't focusing.

And of course I should get a second opinion. Sometimes you just can't see the forest through the trees. I fought for a while last year trying to get a referral from my doc and going back and forth with insurance and then I gave up. I found a clinic/hepatologist at  the U of M that was covered and then learned that my doctor (who is a hepatologist) is part of that practice as well. Weirded me out. And that was that.

The Mayo clinic in Rochester is only 80 miles away, maybe a consult for a second wouldn't break the bank if I provide all the test results. I know this is absolutely what my next step should be. Especially with al the tremendous news being discussed as far as treatment options that appear to be just around the corner. Thanks man!

[jmjm530]

One of our members, NYGirl, felt like she needed outside consultation early-on in treatment, and she saw Dr. J. in NYC. He didn't take insurance, and I think NY paid around $600 out of pocket, but it was well worth the money, according to what she reported back. NYC is a pricey market, so hopefully it will be less where you live. So, if it were me, I'd find the absolute best hepatologist you can, spend the money for a one time consult, and take it from there. It seems relatively straightforward. You have a recent biopsy and a number of procedure reports/scans, etc, that suggest at least to a nurse that your biopsy may not be representative. A good hepatologist should be able to look at all that and give you some answers that make sense..

All the best,

-- Jim

[JackABCD]

Just to give u my own experience, maybee will help u somehow.
Less then 1 yaer ago I did: Fibroscan said stage 4, Fibrotest said stage, and then I did biopsy said stage 2-3. 3 doc, 1 of them very well known hepa said they only believe in my case to the biopsy results. I should say that my case is somehow unique since I have had liver resection in the past due to an injury.

From my experience, biopsy is the most accurate indication for our liver.

status.

Hope I helped somehow.

[copyman]

i had a similar experience when i went to visit dr A in boston. i was scheduled for the fibroscan and right before i was to travel 6 hrs to boston was told i needed a bx within 6 "months". jim helped me by pointing out that the bx can be 6 months before or AFTER fibroscan. so i scheduled a bx with my local doc just so i could get the scan. my intentions where to cancle the bx after getting the scan because the whole idea of me going to boston was to get the scan and AVOID bx. when i got up there they told me the new criteria was 6 weeks and my scheduled bx was like 6 1/2 weeks later. they knew how far i traveled so they said they could give me the scan for their "in office" study. so my point is that they could still give you the scan either by you scheduling a bx with option of changing your mind after scan or doing one as an "in office" study.

PS i ended up having the biopsy. i found the results to be close to the scan & fibrosure. all done within one month of each other
biopsy  stage 1 grade 1
fibrosure  stage 0 grade 1
fibroSCAN stage btwn 1 & 2

[merryBe]

same here, ultrasound showed noyhinh, cat scan a little, biopsy was stage 3/4
I'd trust the biopsy, the others are reading machine that don't show the bridging, If they can't pick it up, what good are they...ok, so a cat scan show a little, but mainly just organ sisze and fluid retention,,,helpful in knowing that you are sick, if spleen.liver are enlarged, etc...but still doesn't tell you what stage and whether to treat. Biopsy gave best info, making decisions possible.
hope that helps

[jmjm530]

As stated, I tend to agree with the others regarding biopsy over scans (not including Fibroscan).  However, I don't feel qualified to fully understand the valididty/ significance of your CT report and therefore my advice to seek that second opinion which hopefully will agree with your doctor and the biopy showing stage 2.

As to Fibroscan, my scan was several years apart from my biopsy, so maybe I was included in one of those "in house" studies, don't really know, but it's always worth asking. Or maybe try another trial center, or "HR", if you're in the mood to travel. However, given your recent biopsy, a confirming report by a good hepatologist may be all you need.

-- Jim

[foofighter]

Thanks for the feedback. Of course my all-time favorite result is my biopsy : )

I've been a fool not being more aggressive about a second. In spite of all my complaining about my care from current team, I didn't want to make them mad at me or think that I didn't trust them and take worse care of me. And the reason I haven't pinned both NP and Doc down about their difference of opinion, is I want to keep my options open to get into trials. (Trial coordinator at their office is going by the biopsy as far as this polymerase trial is concerned. I haven't heard any more details though.)

In my first posts I went bananas, complaining about them. Jim, Bug and a host of others patiently read my diabtribes and told me back then to get a second opinion. I gotta tell you, after reading for a year and a half, I was so embarrassed about those postings... things that everyone has to deal with. When Bonnie Robin came through, I thought "oh my gosh," you sounded like that! Not that there's anything wrong with that. For me though, I felt embarrassed. Anyway I am back as a more experienced community member/poster now, and hopefully a more mature patient.

I spent time online last night trying to find "the best hepatologist in Minnesota" and didn't come up with a long list. Looks like there are some great docs at U of M, but they are in the transplant center, not hep clinic. Don't know if they will see me, but insurance told me I could get a referral. I just had a sister of a friend pass away there (hep c). I am going to give her some time and then contact her about Tawn's care. (Google Tawn Mastrey to read about a great lady who fought till the last minute)

The Fibroscan trial coordinator in St. Louis actually suggested seeing Dr. Bacon at his center. Said he was fabulous and his name came up on a best docs list last night.

And if necessary I will find the money and I am willing to travel. Foresee, does HR do second opinions as well as scans? Is he in San Diego? I have read every one of his posts over the last year and his knowledge blows me away. Don't understand some of them, but I copy and paste most of them into my database.

I have friends/fam in San Diego, LA, Chicago, and Vero Beach FL, where I could stay or make a pit stop at to save a few bucks. And I would imagine you send all your stuff ahead, so the second opinion is just a short office visit, right?

Thanks in advance to all.

[jmjm530]

If it's a concern, it is possible to get a second opinion without flagging your current medical team. Of course you will somehow have to collect all your medical records -- blood tests, CT reports, etc -- as well as your biopsy slide set. Hopefully, you have a lot of that in your posession right now.

Don't know if "Forsee" reads every thread, so you might have to post to her separatly, either here or on the other side. I don't want to try and categorize "HR"'s practice one way or another, by my understanding -- and only that -- is that he is primarily a reasearcher who only sees a limited amount of patients. I think he'd be an excellent person to have a scan with and to consult with but I'd still think you should consider getting another opinion for someone in a more traditional, larger clinical/trial practice that where the empasis is more toward treatment (and decisions) as opposed to research.

And yes, no reason you can't fly in -- fly out the same day for that kiind of a consult, so don't really think that a "pit stop" is needed. Here are some recommendations:

1. NYC  -- Dr. Ira Jacobsen and Dr. Douglas Dieterich.

2. Boston -- Dr. Nezam Afdhal

3. Miami -- Dr. Eugene Schiff

4. North Carolina -- Dr. John McHutchison

[jmjm530]

Wanted to mention that Dr. Afdhal has a Fibroscan, so that might be my first choice. Perhaps they might scan you for an "in house" study like with Copyman, especially since you would be traveling from afar.

[Forseegood]

I think there are different points to either scenario, as we have discussed....I myself would prefer HR mostly because he surveys much more of the liver (as I understand it) to give you a more individualized scan. But then for comparative results, the other scans would be more preferable, just from what I know, and admittedly, I'm no expert. It's just different preferences from what I can see..

It is possible to come to LA to get the scan, at a very negligible cost, course you arrange your own flight. All you need to do is contact me through my profile.

[nygirl7]

Jim said:  One of our members, NYGirl, felt like she needed outside consultation early-on in treatment, and she saw Dr. J. in NYC. He didn't take insurance, and I think NY paid around $600 out of pocket, but it was well worth the money, according to what she reported back.


It was TOTALLY and completely worth the money.  I'm a poor single mom living in a very expensive part of the world and it was VERY difficult for me to come up with the cash however - it was worth every single penny, especially now that I know by having a second opinion with Dr. J. I took his advice to heart and ended up SVR.

One way or the other I agree you need to see about getting clarification of your biopsy results - somewhere.  there is such a BIG difference between 2 and 4 stages that somebody better read the report correctly.

I had to pay Dr. J when I got there but I spent hours with them. He will spend as long as YOU want answering ANY and EVERY question you have (some had nothing to do with me but I asked for others here on the forum).  

Stick up for yourself NOW it's time!  You can do it!  IT's totally worth it to see someone you KNOW is totally going to have your best interest at heart. It might take a while to get in to see one of them so call NOW.

Good luck!

[Hepatitis Researcher]

What aggrevates your diagnostic situation is the fact, that Ct scans and ultrasounds can only diagnose cirrhosis, when it is in a substantially advanced stage,  That puts you in a painful uncertainty that becomes also practically important when decisions re start and intensity of treatment have to be made. There are currently four drugs in development for addition to SOC that hold some realistic promise to improve the SVR chances after the painful SOC, of particular importance for those with advanced disease  because SOC SVR rates move lower with cirrhosis, but also for those who can wait - or think they can wait- until such combo will bcome available.
On the other hand you almost got into the HCV 796 trial, that has meanwhile been abandonded, for good reasons, showing the volatility of some of these approaches. ( Not unexpected, that 796 showed ultrarapid resistance BTW).

With reagrd to the fibroscan, it can, if the ribcage is not very narrow and the patient not very obese, obain very precise information re the elasticity of the liver, which is excellently correlated to the amount of collagen fibers (fibrosis) that the liver contains. Some fibroscans fail, because the quality of the elastic wave that can be generated is suboptimal due to operater lack of skill, rib deflections causing wave disturbaces, obesity or (rarely) real wound scarring. The problem - and this comment goes to Jim- is that in the " standardized procedure"  the judgement of acceptance of a particular individual elastometric shot or picture is left to the machine and its image processing algorithms. If one understands what the essence of the wave speed measurement is as reflected in the details of the individual image, it becommes painfully clear, that the machine algorith sometimes  "accepts" individual single measurements that it should have discarded and also that the speed interpolation tha the machine automatically performs and superimposes on the individual image is not infrquently clearly wrong. This normally is weeded out because only the median of 12 measurements is finally used as "the' reflection of the true elasticity and is the only value that determines the final fibrosis judgement.  In terms of repetitions of the "shots" or measurement of individual elastic values, the rule is simple: the more you do, the closer you get to the reality. Just like 10 liver biopsies would give you more info than one and 40 will really focus you into what is truly present - sampling error is increasingly reduced and the reality of degree of fibrosis comes into clearer focus the more "fibroshots" you do..  It is practical reasons that limit the " standardized protocol"  and it is more a minimum protocol rather than the maximum precision that you can obtain.More mesurements will only reduce the uncertainty window that a particular median will finally represent. Biopsies are only coarsly quantitative in re to fibrosis - hence the "stages". So the more biopsies you would do( if you could, or do a "wedge biopsy", autsch) and if you would (as some French studies did) quantify the fibers with integrated area measurement of the stained fibrous areas and would in parallel do a number of fibroscan shots to the extent that the median now stays rock solid and you have discarded improper waves, then you would come to a very, very close agreement between the two. In the real world, the uncertainties of both methods will combine to widen the window of correlation. It is however easier to narrow the part than stems from the fibroscan due to its noninvasiive nature.

Thus for foofighters situaion a well done fibroscan - if anatomically possible- would quickly clarify where she is positioned in this scary span between her 2006 biopsy and her radiological assessments of cirrhosis..

[jmjm530]

Good to see you back here.

I have no doubt that a very skilled and experienced operator such as yourself offers certain advantages over a machine-processed algorithms. But two points I have made recently re the differences are that: (1) the machine-processed algorithms reduce the incidence of operator bias/error/inexperience (obviously not in your case): and (2) these alogorithms can be cross-referenced with tens of thousands of others for more reporting uniformity in terms of trials, etc.

I would think then that the "optimum" Scan would be to develop two seprate scores, so to speak. The first score using whatever protocol/alogorithms eventually become accepted nationwide: and then a separate score (or analysis) based on a more individualized technique like you use. Not sure if wer're really in disagreement here, as I believe you mentioned in the past, that once a protocol became accepted, you would probably incorporate it into your practice.

I think this important (including the developing computer protocol) because if Fibroscan does make it "Prime Time", it will be probably be administered by many (in many cases technicians) with far less experience than yourself both in understanding the implications and for some time in administering the procedure.

As to the procedure itself via the protocol. From best memory, they did do around 12 probes in a single spot but threw out the high and the low (or two highs and lows, can't remember) before computing what I believe was the mean. Mention was also made at the time that my ribs width? (and lack of fat in the area) allowed for a very good scan. Had my ribs not been ideally structured, not sure what the protocol called for -- possibly a different location, or merely just noted. Same if my BMI was higher than it was. Apparently the difference BMI's between the American's and Europeans is one of the things the current trial is trying to figure out.

One question. I believe "Forseegood" mentioned that you take scan readings from different parts of the liver. The trial protocol as I experienced was to do all 12 probes in one spot. Again, my spot was apparently a good one given my rib cage architecture and lack of fat over the ribs.

When I asked the operator why don't they take readings in different parts of the liver, I forgot his exact reply but he did suggest that they found the readings to be very close with different probe locations. "Surprisingly Close" might have been the term used.

Well enough theory, which I obviously don't have your grasp of. Again, it's great you saw this post and hopefully you and "FooFighter" will get together if that is in the cards. I think we both agree that some more "work" has to be done to come up with a more confident assessment of FooFighter's degree of Fibrosis, although my guess - and only that -- after reading the conflicting reports by doctor and nurse -- is that her biopsy probably will be correct. But I certainly wouldn't want to gamble on that and hopefully a scan and/or a second evaluation will give her the confidence she needs in her dx to make the right choice moving forward.

All the best,

-- Jim

[jmjm530]

Forgot to ask, re your protocol. Since your're not using computer alogorithms to correlate scan results with biopsy stages -- how do you determine then if someone is a stage 2 as opposed to a stage 3? Is this something you can "see" like a pathologist sees under a microscope? If so, then this is a radically different approach from the scan protocol where I don't believe the operator "sees" anything, although I could be wrong on that.

But if you do actually see fibrotic tissue/bridging, etc -- then the type of "double" report I mentioned could be very useful, in spite of bringing operator bias/error back into the equation as we now have with needle biopsy.

As a personal example, I had the same biopsy slide set read by four different pathologists, all supposedly excellent, at four  different hospitals, including the scan center's pathologist. I was staged at: 3, 2, 2.5 and 3. Pathologist bias therefore was a full stage. My scan put me somewhere between stage 2 and 3  and was taken three years after the biopsy mid treatment. A second scan put me closer to stage 2 and was taken I think four months after I stopped treating.

[jmjm530]

Elaine's (child24angel) 24-year old son, Nick has hemophelia and is a 3X non-responder with apparent cirrhosis. If you think your expertise could be helpful, it would be great if the two of you could get together in some capacity.

[copyman]

glad to see you had a chance to stop back :-) i had a question about a fibroscan i had in Aug in boston. wanted your opinion on the results and what stage you would have put me at. the reason i ask is the person that did the scan was very young and i had a feeling they had not done many before. i had a biopsy about 6 weeks later that had me stage 1 grade 1. here is the exact measurement from the fibroscan form:

median fibroscan measurement 8.8 kpa
IQR 1.1 kpa
number of attempts 11
number of measurements obtained 9

[Hepatitis Researcher]

When several pieces of information come together, like in your sons case, it is likely that he has cirrhosis that has led to one of its major complications :ie  portal hyprtension.  The term cirrhosis is broad and complex and the functional consequences of intense fibrosis are severalfold :
1. Restriction of portal blood flow, leading to higher than normal pressure in all of the portal vein connected blood vessels, with the tendency of the body to develop collateral ways to remove the blood from the portal system, therefore esophageal and gastric varices, in the spleen the extra venous pressure can lead to enlargement.
2. The synthetic capacity of the liver can be reduced due to a reduced mass of functional hepatocytes. (Albumin, clotting factors, prothrombin time etc). Also some factor stimulating platelet synthesis is produced in lesser quantity, so, together with enhanced splenic activity, platelet numbers move downwards.
3. In cirhosis/intense fibrosis the intimate exchange between the portal blood and the hepatocytes can be reduced so the processing and cleaning -detoxifying and metabolic functions of the liver deccrease, because the space of Disse is filled with fibers now precluding proper contact and diffusion of the portal blood to the processing hepatocytes. The processing of intestinal ammonia into nontoxic urea is one example of the livers detoxifying  capacities that slowly fail, leading to accumulation in the systemic circulation with subclinical and manifest hepatic encephalopathy. Thats why your son is on lactulose, to counteract the ammonia production and more.


The clinician is in the difficult position to estimate the overall situation of the three components of declining liver structure/function from a limited set of parameters. Thus overall the term cirrhosis can mean many substages and subfunctioon declines that can only be estimated. Everything in the diagnostic armamentarium needs to be put together to come up wit the best possible estimation.

[Hepatitis Researcher]

Each "shot" of the fibroscan probe gives you a wave propagation pattern that ideally is smooth and reflects only one "clean' wave that propagates through the liver and is followed by rapid ultrasound pulses that identify zones of higher density that the elastic wave generates as it travels through the liver. This is one dimension of the two dimensional plot that is generated for each shot, the second one is time. Therefore the angle of this density pattern is ideally the propagation speed of the elastic wave. There is a direct formula between  (the tangens of) that angle and the elastic module of the material, expressed in Kilopascal. That is a fixed formula, nothing to manipulate or judge. What is open for interpretation is whether the wave is clean and smooth enough or contains artefacts. The " algorithm" is not the relation between the liver stiffness and the fibrosis stage, but at this point in the process it is an imaging processing program that "looks " at the picture of the individual shot and determines A: Is there a clean wave or too many artifactual secondary scatterwaves? B; If the machine algorithm accepts the individual picture as worth evaluating, it then "measures" the above mentioned angle or slant and prints/overlays the results of its interpolation/calculation on top of the twodimensional picture. The human eye and brain can see if  A: a picture was accepted that was too scattered/artefactual and or B: that the superimposed "slant line" was yes or not not placed correctly on the true elastic wave that can be seen. Ideally the operator can agree with the machines "acceptance decisions and placements" and then everything is according to "protocol". Now you have to trust me that a humans image processing capacity are still vastly superior to that of such a software and as such improper machine acceptances should be discarded. If you dont, your results will simply wobble much more around the true elasticity, which is all we are trying to measure. The placement in one of the "F" categories is simply done by overlaying the patients Kilopascal results on the frequency distribution of the trial results that link the two methods together. There is no computer algorith involved here and no more protocol. If the reference intervals should be slightly adjusted from time to time (like to the "American population") it does not mean that your fibroscan elasticity measurements have changed - maybe you are now just scratching the surface of the 95% intervall for stage 3 fibrosis.

[foofighter]

Thanks so much for stopping by and for your explanation of the scan. It was music to my ears. As everyone here, I just want to make as informed a decision as possible.. I think it is absolutely something that could help me to do so.

Hopefully I am anatomically correct! I will check with Foresee to get more details.

[jmjm530]

HR: maybe you are now just scratching the surface of the 95% intervall for stage 3 fibrosis.
-----------------
I can't say I now have a full understanding of the entire process/differences between the two scan techniques, but given the limitations of this forum, your answer was very helpful.

As to the above quote, I'm guessing you are referring to my three year old biopsy results, as opposed to the two scan results? The pathologist who staged it at 2.5 actually took the time to show me the slides in his office and explain why it wasn't exactly a two or a three. What I'd like to think is that now I'm closer to a stage 2 (or even better) based on my second Fibroscan post treatment.

If I had a "need to know" I'd be at your office in a heart beat, assuming you'd see me. However, right now, I'm more comfortable avoiding tests, doctors, and procedures, at least for the time being. Just too much of all the aforementioned during the past few years :)

Thanks again for all your help.

Be well,

-- Jim

[jmjm530]

Foo: Hopefully I am anatomically correct! I will check with Foresee to get more details.
------------------------------------------------------------------------------------------
If "Forsee" is busy, I'd be happy to check on the 'anatomically correct' part :)

[foofighter]

Yikes! Should have re-read my comments before I hit post. But then we wouldn't be having such a good laugh.  : )

Good one Shecky530!