Dilated pancreatic duct: Should I get a second opinion?

@aminaahmoody1 thank you for your encouragement, and no need to apologize for "venting." In all honesty it feels much more difficult these days to be a well informed patient than it used to be. I am unable to secure and earlier appointment, and because of this I have decided to more or less try not to "overthink" what might be going on with my liver/pancreas. I saw my doctor yesterday and was dismayed that he could not explain to me the results of many of my recent lab tests, instead telling me that he had made a referral to a hematologist, and an appointment with that specialist could take "awhile." I understand your feeling like a "lab rat" and I would think twice about becoming part of a clinical trial. You have enough to deal with already, especially since you have a family, including children.
I hope your appointment today goes well. I will be thinking of you.
With respect to my patience, admittedly it is running out. Best of luck to you and thank you again for the post

@frances007 Thank you for telling me your story, and I commend you for having so much patience but it is a doctors responsibly to inform and also investigate any and all abnormal result and sometimes waiting can be more harmful than good. We have to be our own advocate because if we don't our life is at risk. I have made it my mission to alway research my abnormal test results, I just wish I had done so in 2021. I have a doctors appointment today with my oncologist I guess to come up with a treatment plan, sadly since I have gotten my results back from my biopsy I'm more confused now then I was before. The oncologist surgeon want me to get a biopsy done on my liver now and he wants to do a genetic testing because he's saying that I am to young to have pancreatic cancer. Also he wants me to be apart of a clinical trial, this is so overwhelming. I just want them to treat me so the pain can stop but I feel like a lab rat. I am a person, a mother and a wife and I want is to be able to see my youngest daughter graduate from high school at least one of my children to get married (smiling) but I fear that will not happen because their taking they time to fix it. My apologies for going off course I'm just venting. The summer is not that far off but I would try to get an earlier appointment, time is a virtue but its also precious so we have no time to waste it. I pray that whatever it is that your are facing its easy and able to be cured. I wish you all the luck!

Thank you @aminaahmoody1.
Your experience mirrors mine, and I do wish you the best.
During COVID I presented to the Urgent Care at Sutter Health, because I was worried that I might have contracted the infection, but had not. During the visit I mentioned to the doctor the ongoing pain in my upper right abdomen that had been present for months, and which my doctor attributed to acid reflux. An ultrasound and CT were ordered which revealed dilation of liver and pancreatic ducts and some cysts. Later I had a ECRP which showed that since 2020 there had been an increase in the dilation. It took me 3 years to finally be paired with a hepatologist, with whom I had my first appointment with a few weeks ago. At some point this summer I will have an endoscopy in an effort for her to find out what is blocking my bile duct(s). Needless to say, I understand how long and arduous the road to a healthier life can be. Patience is truly a virtue I have only just learned how to be.
Today I will see my PCP and intend to ask him why 3 months ago he asked me if I wanted a new doctor, and I wonder if that is any indication that he does not know how to treat me. Today I just want the 20 lab tests I recently had done, explained to me because they were all flagged.

I know I'm late to this discussion, I wouldnt have been if the hospital would have inform me there was a mild prominence of the pancreatic duct along its course in 2021. I would not have to go through what I am going through right now. In Dec 2021 I was in a car accident which cause me to go to the ER and the doctor did a CT of my chest, abdomen and pelvis which showed right renal hypodensities too small to characterize but statistically represent renal cysts and Colonic diverticulosis without CT evidence of diverticulitis, Mild multilevel degenerative changes of the spine. SI joint degenerative changes and last but not least There is mild prominence of the pancreatic duct along its course. Otherwise unremarkable. Fast forward to now, I have pancreatic cancer with metastatic disease to the liver. The mild prominence of the pancreatic duct wasnt in the impression report so when i went to see my primary care doctor never mentioned it, so it wasnt caught early. I just wanted to come up here and say ALWAYS and I mean ALWAYS find out what is going on with you and if that doctor doesnt want to look into it find another doctor. I wish you all blessing and good health.

Two things that I’d like to mention. If perhaps they say you have a neuroendocrine tumor (NET), pls be certain to seek out a NET specialist. Also, surgery on your pancreas is a very serious thing. Make sure you are clear on what it will entail. It was described to my husband as much easier than it turned out to be. He had a NET/IPMN on the tail of his pancreas and had a pancreatectomy & splenectomy in Jan.
Thoughts and prayers. Glad you are seeking excellent care!

Thank you for sharing your story. Second opinion seems like a great idea, also a dietician with experience with hepatobiliary disorders. I have seen one at Memorial Sloan Kettering Cancer Center. It was a virtual visit.

I have not posted in a while, but I too have dilation of bile and pancreatic ducts that showed up on multiple exams. including the MCRP. I recently had an appointment (finally) with a hepatologist, whose intellect I found to be astonishing. She advised that the radiologist cannot diagnose any kind of liver or pancreatic disease and that I would need to have an ECRP, which will be scheduled in San Francisco in the near future. She wants to find out what is blocking the bile duct(s). She further explained to me that my long term opiate use could be the culprit, which I was well aware of. I am still a but mystified however, because after she ordered and I had, many lab tests completed, when I asked her if I needed to be concerned about many of the flags, she referred me back to my PCP for explanations. She also told me that she was not concerned about liver cysts, which was a relief. A biopsy will not be needed either, good. Having said this, I am still frustrated because my clinicians are very evasive when it comes to answering my questions, which are probably too direct. I had more labs which have confirmed a diagnosis of hypogammaglobulinemia. I am also being screened for multiple myeloma, a disease which killed my father. Having said all of this, I have pretty much decided to just keep moving forward, not giving any of these findings a lot of energy because it is wasted thought and energy. If my clinicians are not concerned, then I am not going to continue to fight with them in an effort to get whatever treatment may be available to me. I will simply continue with the testing, continue with my art, which has really taken off, and continue to express kindness to others and give to my community. If there are treatments available and offered, I will follow up. If not, I will move on. I am maintaining a weight of about 95 pounds, still have little appetite and am malnourished because I have no appetite as a result of the bile duct issues. Life is too short to be worrying all the time over something I cannot control.

Best of luck to you. If I can be of any help please do not hesitate to inquire. I will continue to post as I receive new information. This patient portal has pretty much become a lifeline to me and has really had a positive impact on my life, and I thank all of you.

Hi I belatedly saw your post and am wondering how your husband is doing. I have very similar symptoms, no jaundice but MRCP was similar. Thank you.

Is it unusual to proceed to surgery w/o a biopsy or some other definitive proof there is an IPMN?

The surgeon believes the CT scan, EUS w/o biopsy and MRI/MRPC provide sufficient proof of IPMN even though none conclusively identified an IPMN and recommends the surgery.

The surgeon offered to request a new EUS with biopsy if I wish but they said they didn’t believe it was necessary and that it could result in pancreatitis which could be problematic.

The surgeon seems quite competent but I just have little knowledge to base my decision upon.

Really hoping Mayo will see me as I know they have much experience with these topics.

My reply didn’t end up where expected so replying again.

I have been referred to the gastro team at Mayo Rochester and have an appointment to speak with a nurse next week.

Praying that Mayo will see me as the local resources are fine but do only a handful of these surgeries each year.