Talked to hepatologist re: abnormal MRCP

Hello sb4CA,
Have you had the ca19-9 blood test yet (pancreatic cancer and some other cancers)? That was one of my first and easy tests and you can even ask your primary dr to order it. Best wishes in your journey.

Thanks for commenting. I had the blood test in early '23 and it was only very slightly elevated. They had me repeat it later and it was normal. I also had another cancer marker test (AFT) that was normal (thank god). My blood work has not appreciatively changed and have had chronic (somewhat mild) elevation in liver enzymes since I had my gallbladder taken out. ALP has been my problem child consistently which points to more to a bile duct issue. My bile acid went from normal to abnormal in about 10 months too. The original MRCP was done for the liver/bile duct issue.

First, I am very sorry that you are facing this journey-how brave you must be! And to help others with concerning issues with the pancreas. I suspect we're neighbors! I initially went to a hepatologist at UCLA but transferred care to UCI but that was for my liver and not my pancreas. (I have had abnormal liver enzymes since my GB was taken out years ago with ALP being the most concerning). I am growing increasingly concerned that there is a 4 month wait for the new EUS/ERCP and that no one at UCI is batting for me. You likely know that often you may not see the primary doctor and that routine issues may be addressed by one of the department fellows. At least that is the case for me. They have not requested any new labs or alternative imaging. In the past I have asked for a GI referral at UCI, but there is no advantage than if I called one myself. I am primarily treated through Providence and have a standard GI with them. Ironically, I just looked at the doctors at Hoag this morning, no kidding! Do you have any opinion if it would be an advantage to see someone in their pancreatic program or which doctor you saw? Were you pleased with their initial diagnostics? Know that I am very thankful for your comment and wish you the best success going forward.

Dr. Paul Korc and Dr. Nguyen do the EUS/ERCP there and they are excellent! They are in the GI department. They are both good and when I was first diagnosed with cancer in 2022 I got in the following week for the procedure. I changed from Providence to Hoag when we moved to Huntington Beach a few years ago. I might see Dr. Seery in their pancreatic/liver dept. She works with another dr in that dept. but I haven’t seen them. Thank you for your compliments and keep in mind we are all in this battle together.

I find it incomprehensible of a wait time of 3-4 months to get an EUS and ERCP. When I exhibited symptoms, I chose an NCI designated center of excellence with a hepatobiliary and pancreas programs. When a STAT ordered CT imaged a neoplasm in the head of the pancreas, an EUS was performed the next morning and an EUS the following day.

The following links list both NCI designated centers of excellence and comprehensive cancer centers that have pancreas programs. The Pancreatic Cancer Action Network (PanCan.org) has case managers that can provide names of specialized centers where the EUS and ERCP are done frequently and may have a shorter interval to have the procedure done.

CENTERS OF EXCELLENCE

One problem is going to another center is whether one’s health insurance if not on Medicare will have a restriction on out-of-network medical centers in providing coverage. For those that chose an HMO over a PPO plan, it will restrict patients to an in-network facility. Unfortunately many people never expect they will be affected by a catastrophic illness and realize savings in premiums comes at a very high cost to surviving such an illness.

I have contacted hoag today and am waiting a response. I also contacted my PCP about the delay. I’ll let you know how this goes

Thank you for those links. There are 2 within close distance. I had read about them in a recent report. Can I ask what symptoms you had? Also the MRCP doesn’t show any kind of obstruction or any other kind of thing. They are basing all of this on the duct dilations. That is really frustrating me and I’ve wondered about the use of other types of imaging. But you’re right about having to wait. I either get the message they’re not that concerned or I’m falling through the cracks. I’m now pushing forward on getting this test done much earlier. Also I am on Medicare but we have supplemental PPO insurance. We worked with a counselor to figure out which supplemental insurance to get. We’ve always had PPO insurance and I couldn’t imagine an HMO experience especially as we’re getting older. Thank you for sharing your experience. How are you doing?

Hi, I wanted to update you that Hoag contacted me today to set up an appointment with Dr Kankotia in their GI department. He seems to have a lot of experience in the exact areas that seem concerning in my reports and the use of technology/procedures. I'll talk with him Tuesday morning and in the interim will need to run around to see if I can get a CD of the MRCP imaging along with a summary of other imaging and testing I've had done that evaluated duct sizes and serum abnormalities. Without your recommendation I'm not sure I would have immediately contacted them. I was a little passive about it by using their inquiry form where I summarized my situation. And I was so surprised they called so fast (just sent inquiry yesterday) and got me in within a week. So I want to thank you in advance. I've never gotten an appointment with a specialist that fast. I'm already impressed lol

Hi sb4ca,
That’s wonderful news! I’m so glad Hoag was able to accommodate you and I wish you the best treatment! Please continue to post as I’m very curious what your diagnosis will be; you have a good ca19-9 so I’m hoping that’s reflective of a benign condition rather than a cancerous one.

I found out today they were able to find almost all of my imaging which was fantastic. I was throwing up last night and really didn’t want to do anything today. But I’m putting a letter together about the main concerns and what I want to talk to him about. It’s pretty odd because I already have doctors so fine tuning the objective of the appointment seemed reasonable to list. Thanks for your encouragement and I’ll let you know what he says. It’s weird even saying what “he” says because I’m used to what “they “ say lol