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,
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.
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!
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,
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.
Hope I helped somehow.
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