Biopsy and Fibroscan

[suz56]

Hello

I was diagnosed with PBC in May after they removed my gallbladder and took a liver biopsy. My questions is...the biopsy state I was Stage 1 but I received a phone call from my gastro yesterday who told me I am at Stage 3 and probable Stage 4 according to the fibroscan. I'm not sure why the discrepancy? He also suggested that I get in contact with Mayo (Missouri) Clinic to get to know the liver transplant team...I'm not sure if I do this? or does a doctor refer me? I live in Springfield il. I'm not even sure about a timeline on everything. I am to repeat the scan in 3 months. Thanks

[Zelda5]

I didn't think there was a Mayo clinic in Mo. Theyve got one in Rochester Minnesota, Florida and Arizona. I think the one in Minnesota is the original and best one in liver issues.

[gwillistexas]

If you don’t know, fibroscans aren’t always accurate. I’ve been where you are. I had a fibroscan by a dr himself and he said stage 4 fibrosis (not my regular hepatologist). I went to my regular hep and he said that couldn’t be right. He ordered an mri and mre and then a biopsy. Biopsy results were stage 1 fibrosis. I’m very thin and no longer a good candidate for fibroscan and because of the inaccuracies. Your biopsy is a more reliable assessment because they test the liver cells and can stage your PBC. It’s scary but hang in there. I’m surprised your dr even mentioned a transplant team based on that fibroscan. Have you considered a second opinion from a hepatologist?

[gwillistexas in reply to gwillistexas]

I didn’t mention, my PBC was also staged at 1.

[Fluffysmom in reply to gwillistexas]

Hi I was reading your replies on this thread. I was diagnosed back in 1995. I had a biopsy at that time and have never had another one. Last year my fibroscan results showed a large amount of stiffness (not sure if my terminology is correct) and the doctor did not think it was accurate as my labwork is normal. He had me do an MRI and as I understand it, the results were middle range. He didn't use the word stage? I don't even know what my original stage was. He is now recommending a biopsy. I see another post of yours saying you had several tissue samples taken and ultrasound guided. I need to get more information so that I ask the right questions before agreeing to the biopsy. Any suggestions?

By the way you might think after all these years I would know more than I do. Truthfully, other than swallowing ursodiol every day I have not had any problems and no symptoms, so i guess I've kept my head in the sand. Thank you for your posts.

[gwillistexas in reply to Fluffysmom]

Good Morning. I wanted to let you know I read your reply. I will be leaving for work soon but I will get back to you later this evening and chat with you. I’m not sure where you are but I’m in Texas and it is 6:00 a.m.. Have a great day!

[gwillistexas in reply to Fluffysmom]

I’m home now with a nice strong cup of coffee, lol! So, when I was diagnosed in 2017 my fibroscan indicated stage 2 fibrosis. Once I was put on Ocaliva my enzymes normalized very well. In 2020 it was either my alt or ast was elevated. That’s why I had to have my first biopsy. (To rule out AIH). All clear on that. The biopsy was ultrasound guided so the radiologist could see any areas of concern. I believe he took 4 samples. There was a small area of stage 3 pbc and all other samples were stage 2. Fast forward to March 2023 between a fibroscan, mri and mre, the pathology report said possible cirrhosis. I was in total shock. So my hepatologist said the only was to know is another biopsy. This one was with endoscopy and ultrasound guided. Pathology reports came back stage 1. So I think most biopsies are done with ultrasound. I suppose if your dr doesn’t mention ultrasound guided, ask him. That’s really the only sad they can see what they’re taking samples of.

You’ve had PBC a very long time. It’s so good you’re doing well.

[suz56]

I sure hope I will follow in your footsteps! The Dr mentioned the liver team way before the fibroscan when I thought I was stage 1 from the biopsy. He said just to get to know them which I also thought was weird if I was only stage one. He said nothing urgent but to go ahead and make contact. I think you are correct in getting a second opinion. Its so hard not knowing where your body is even though the treatment will be the same :))

[gwillistexas in reply to suz56]

I will say also, my fibroscan scores have always shown stage 2 fibrosis and my first biopsy confirmed that. I take Ocaliva which has been shown in studies, to reduce fibrosis which I’m assuming it has reduced mine. I have one of the best hepatologists in Dallas. He has never mentioned me needing to meet a transplant team. I personally feel if you see a hepatologist you will feel better about all this. Too much confusion for you, especially being newly diagnosed.

[JeanAZ]

To answer the question about different stages. Your Liver can show different stages because when they take a bx (biopsy) in one area of the liver it can be stage 3 but in another area of the liver be stage 1.

Biopsy is the gold standard for staging the Liver.

Transplant team: that’s going to need a referral from your Gastro. Most definitely.

God Bless you Suz.

[gwillistexas in reply to JeanAZ]

I agree but my biopsies are always done with no less than 4 tissue samples. My last one was done with a scope and of course ultrasound guided.

[suz56]

You guys are the best and this is this forum is the ONLY thing that has kept me sane not knowing anything about this disease and out of the blue it comes. I really appreciate your replies!! You make more sense of the information that I receive.