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Avatar universal

No Fibroscan - Jim Help

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!
39 Responses
Avatar universal
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

Avatar universal
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
Avatar universal
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!


Avatar universal
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
Avatar universal
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.
Avatar universal
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
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