Talked to hepatologist re: abnormal MRCP

ERCP’s are a fine tool. Biopsy’s around the ampulla de Vader worked for me when I finally had samples sent to Johns Hopkins. That was my 4th ERCP hunting & pecking. JH came back showing slight phase 1 at the ampulla.
Next week I had the Whipple good thing cause that seems to have stopped any cancer Whipple was done in 2013..good from that point forward. Many tests to see if chemo was necessary and no need found, 2 years of testing..

I really appreciate you sharing your experience. Last year I did have an ERCP with a liver biopsy. The pancreas only showed some dilation and didn't even show any cysts (they are very small). But my MRCP continues to pick them up. That is almost shocking you had 4 ERCP's before they found an abnormality or took the biopsy. That is the exact same area that they are thinking I could have an issue. What were they looking for and/or what test was showing something wrong if you don't mind me asking; what caused them to keep probing? My docs are hepatologists at a medical university in CA so I do trust them but this imaging stuff is really frustrating me. But the experience you're reporting makes it feel like it may be more common than I thought. I thank you for that.

Yes, I did have four ERCP‘s, but the first one cleared my symptoms up completely!! My symptoms were very unusual to say the least.. For approximately three months before my first ERCP, I felt like I was getting eaten from the inside out by red ants!! Have you seen the old western movie where the fellow was tied down by an ant pile and that was his torture well, that was mine! My liver count was through the sky. They kept looking at my eyes for yellow jaundice, which I had none! They were totally puzzled. At any rate, the first ERCP, the fellow went in, found my der-Vader valve basically clogged up..he burned it open I gushed out fluids. He said it was like getting buried in fluids, and from that moment on all of my symptoms, including all of those red ants went away.
As far as I was concerned, they had fixed me completely. He took biopsy on that ERCP had to go back in three more times probing and getting biopsies because nothing was coming back with any cancerous tissue until the last one the fourth one which I asked to have a piece of that sample biopsy sent to Johns Hopkins.
Johns Hopkins came back and says slight level one pancreatic. And so from that point on the Endo surgeon said go down and see Eric Kortz and get a Whipple.!!

Next ERCP take biopsies right around the ampulla valve! Send those biopsies to Johns Hopkins. Ask them for the report! Sounds to me like you’re Amila valve is clogging up sometimes and then opening so it’s still working sort of, but have them look at that tissue very very closely!!

I can hardly imagine asking them to make sure they take a biopsy. But I am starting to wonder about the guy who does the EUS/ERCP's at the University. As I said, I'm at a teaching university in CA. So if you've heard of UCLA, UCSF University Medical schools, I am part of that. The doctor who did my last one is the same who is doing the next one. My last EUS/ERCP was virtually normal last summer. No cysts nor calibration of 5mm+ duct dilatation that repeated MRCP's are showing. Surely two radiologists didn't over qualify what the MRCP's are showing so that makes me wonder about the EUS/ERCP interpretation or what was or was not visualized. I have been doing some research through PubMed on the success rates of both of these tests to identify abnormalities and obviously nothing is 100%, but EUS is rated as the better test. I'm also wondering how far I should push to get the EUS/ERCP moved up. Without having spoken to any doctor, the University called to schedule it in July. But when I finally did speak with a doctor (not mine), he said he thought it should be moved up and he would try to see if that was possible. Four months is a long time to wait.

What symptom’s do you have?

Really just GI-stomach upset, upper abdominal discomfort, and some new pain on my right side under the ribs that I notice mainly at night after I eat. I have a long standing history of somewhat mild, but chronic elevated liver enzymes-particularly with ALP. It all started right after I had my GB taken out. The liver is functioning normally. I have high bile acid and most of my ALP isoenzymes are in the liver. None of my imaging over the years has mentioned pancreatitis, features of chronic pancreatitis and the new MRCP doesn't mention it either (not sure if that matters). But in 18mths my pancreas went from normal to diffusely atrophic, holding somewhat steady at 5mm for pancreatic duct but common bile duct grew from 9mm to 13 mm and have developed some intrahepatic duct dilation. LOL-Thanks for asking, sorry it was a whole summary

The only thing I can think of is to make sure that your gastrointestinal doctor has the most experience you can possibly find. Biopsies with the next MRCP would be a good thing, I would continue with that until something is discovered. Send whatever biopsies or portions of those to Johns Hopkins they know what to look for. Keep me posted as to what is discovered.

Thanks for your advice. I really mean it. There is literally no one I can talk to about it and certainly not a person who knows anything. Not having a specific point contact outside of my liver doctor who books months and months in advance doesn't help with the anxiety part lol. But I'm loathe to seek outside help because these doctors are likely the best in my area. I made an appt with my GI doctor to talk about the symptoms I'm having and also because the UCI doctor told me I need to be tested for pancreatic enzyme deficiency. I'm hoping I can off load some of this to get his viewpoint. Also will talk to my PCP who in the past hadn't hesitated in reaching out to my hepatologist. So thanks again, and I'll keep you updated!

I started out at Hoag Hospital in Newport Beach, CA, but I’m now at UCLA now that I’m at stage 4 pancreatic cancer metastasized to liver with lesion(s). I get my chemo at the Irvine chemo facility, but I also have video calls and my original consultation for stage 4 is with Dr. Zev Wainberg with the pancreatic oncology dept. at UCLA and I find him very knowledgeable.