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MRI MRCP - Cyst (IPMN) - Newbie

Pancreatic Cancer | Last Active: Mar 20 1:22pm | Replies (92)

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@frances007

Thank you for your kindness and concern. I will update when I have had a chance to see the liver specialist who is part of the study for primary biliary cholangitis, primary pancreatic cholangitis. I have just sent off a note to my PCP for a referral to her.
Yes, the process is frustrating as you can imagine. It's difficult to get that feeling, "no one wants to talk to me." But, I see my urologist tomorrow for a post op visit, and she usually has a way to make me feel better about everything. I find that female doctors are more sensitive to patient concerns as opposed to my male doctors.

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Replies to "Thank you for your kindness and concern. I will update when I have had a chance..."

Hi, I read your story with interest. I had an MRCP in August that shows both liver and pancreatic ducts enlarged, like yours. Also found two small cysts, one in the head and one in the tail. It was ordered at UCLA by their head of hepatology dept. (not sure we can name names here). He told me the cysts were like "pimples" and nothing to worry about. However, I'm still very concerned because it results in something called the double duct sign which is scary when you read about it. I'm in Orange County. Last weekend the LA times featured an article about a comedian who beat pancreatic cancer and she brought up a program at UCSF. I looked up the study and it's a registry for people with pancreatic cysts. I contacted one of the directors there and heard from her right away. Now I wonder if you and I are talking to the same person. My contact is Dr. Kim Kirkwood at UCSF. She said I can get the appropriate imaging down here and she can see patients throughout CA. She also offered me a second opinion session with her which I'm setting up today. These IPMN's at less than 1 cm are put on a watch protocol just like you brought up. She commented that the dilated MPD may call for more testing. My report had the suggested follow-up protocols in these cases, which is an MRI pancreas. My hepatologist never even brought that up. Funny, I have had abnormal liver enzymes since 2013 when I had my gall bladder removed. About 4 years ago I had a liver biopsy at UCLA which wasn't conclusive. They thought it was either drug induced or primary sclerosing cholangitis. Now they want to repeat it. Have you been told anything about your liver directly? I'm having problems separating the two in my mind. Lately, I've been having stomach problems that are worse after eating. So of course I didn't really want to eat and since last Fall I have lost 7 lbs and I'm tiny to begin with. That loss puts me in a lower size jeans than normal. Honestly, if I could get into Mayo I'd likely go for it. I've been in the Arizona facility before. When you have complicated issues (and I have more than the biliary tree issues, such as a poly radiculopathy/neuropathy of unknown cause), they do a fantastic job of referring you immediately to specialists that you can see almost like the next day. It's very intense and highly condensed. If your insurance covers it, I'd advise it. Let me know your thoughts, especially if you're going to see Dr. Kirkwoood (via zoom).