Dilated pancreatic duct: Should I get a second opinion?

@frances007 - May I ask what symptoms you had leading to the diagnosis of dilated bile duct 2 years ago?
It sounds as if you suffer from a lot of pain- of course you want to know what’s going on!
Having an MRCP sounds like a good start. I just don’t understand how your doctor could get angry at you want answers.
If you don’t feel comfortable with your doctor it might be a good idea to get a second opinion as soon as possible. Try to find a doctor at a university medical center.
You don’t want to waste time now- please let us know about your testing!

Thank you for asking. 2 years ago I began complaining of upper abdominal pain and loss of appetite that had been ongoing for about 8 months. I also mentioned to him that I had a lot of itching, which my doctor thought was a reaction to the Bentyl I take for IBS. My PCP dismissed my complaints and said it was acid reflux. During COVID-19 I went to urgent care for a COVID-19 test and mentioned to the physician the upper ab pain. By the grace of god, he ordered an ultrasound that revealed a dilated liver duct. My PCP called and said he had good news and bad news. The findings were not good, but they were going to monitor my problem. During the past 2 years I have had so many diagnostic tests that I have lost count. The most recent ultrasound revealed dilation of both my liver and pancreatic duct, which in my mind tells me the problem is not getting any better. My gastroenterologist discussed scoping with me, reminding me there was a 50% success rate and that the MCRP would be the best way to determine what was going on. He said he could not rule out a mass, even though I have had 2 CT scans. As I have mentioned, I have an interstim device to help me urinate; in order to have the MRI I had surgery a week ago to remove and replace this device with one that will now allow the MRI which is being scheduled. I take Norco for pain and that helps. I recently tapered off Methadone because the gastroenterologist said there was a correlation between opiates and dilation of bile/pancreatic ducts. I suffer from chronic pain as a result of a very bad car accident 9 years ago. I have been on opiates a very long time, starting with fentynal patches, and then changing to methadone because of the Medicare "donut hole." I recently found a doctor in San Francisco who is doing a study related to my condition, and asked my PCP for a referral, which I will secure. It has been a slow, painful and frustrating process. I asked my PCP for a referral to a different gastoenterologist, but he would not give me one. I recently changed to a new PCP and will obtain a referral to a new doctor as I want a fresh set of eyes to look at my condition. While I have always been on the low side as far as weight, having lost over 15 pounds since March of this year concerns me. I have no appetite, take phenergan for frequent nausea and now beginning to feel much weaker than I have ever felt. I am very active, but now seem to be slowing down. My PCP mentioned to me a few days ago that I had a low red blood cell count, but did not want me to take an iron supplement, contradicting what the stomach doctor suggested. In any event, I will move forward with the testing and obtain new referrals etc. I thank you for your concern. I recently exchanged messages with my OB/GYN who said she wished that doctors could go back to "slow medicine" focusing more on the individual, as that is what patients want. I do not see that happening at Sutter Medical Foundation where I have been a patient for over 30 years.

Here is the most recent CT scan. Perhaps I am overthinking these issues; however, I'm not a doctor and at this point unable to rely on my treating physicians to explain anything to me, other than the fact they want more studies.

TECHNIQUE: Transverse and sagittal transabdominal sonograms of the upper abdomen, aorta and IVC were performed in conjunction with color Doppler.

FINDINGS:
Liver: 16.4 cm liver is homogeneous without focal mass. There is persistent moderate intrahepatic biliary ductal dilatation

CBD: Measures 11 mm without obvious choledocholithiasis or biliary ductal mass. Common bile duct measures 13 mm in December 2020.

Gallbladder: Nondistended without stone, inflammation, or tenderness

Spleen: Homogeneous, without focal mass or enlargement. Spleen is 8.0 cm in length.

Pancreas: Visualized portions of the pancreas are grossly unremarkable except for moderate dilatation of the main pancreatic duct to 2.3 mm without obvious pancreatic mass, intraductal nodule or stone.

Kidneys: Right kidney measures 9.0 x 3.9 x 3.4 cm with 7 mm cortex, while the left is 8.9 x 3.6 x 5.2 cm with 14 mm cortex. There is no definite hydronephrosis, abnormal soft tissue mass, or stone in either kidney.

Miscellaneous: Aorta, inferior vena cava, and main portal vein are normal in caliber and direction of flow. There is no definite ascites or significant pleural effusion.

@frances007, I agree with @astaingegerdm that you have a right to have the results of your tests and possible diagnosis explained to you in layman terms. Not only will that put your mind at ease, it will help you and doctors to work together as a team. It's good to ask questions.

I moved your posts to this existing discussion:
– Dilated pancreatic duct: Should I get a second opinion?: https://connect.mayoclinic.org/discussion/dilated-pancreatic-duct/

I did this so that you can connect with @doxie2 who is going through a similar situation right now. Frances, have you considered getting a second opinion?

Thank you, Yes, I am in the process of getting a second opinion from a physician in San Francisco who is currently doing a study on patients with my condition. I understand patients these days really have to advocate more for themselves than they used to. Sometimes it can be quite taxing.

Thank you. I can tell that my symptoms are worsening as I have not lost an additional 7 lbs in just a week. The pain in my upper abdomen has increased and now I am having chronic diarrhea which may be related to a magnesium supplement I have begun taking for leg cramps. I have asked my doctor to order some additional lab work as the gastroenterologist advised me I was anemia and needed an iron supplement. My PCP told me not to take iron as it can sometimes cause diarrhea. Because I have been feeling so weak I have taken 2 slow release iron tabs in the past couple of days, but because of this diarrhea I have stopped with the iron. I am still recovering from the interstim surgery of one week ago, and admittedly not taking it as easy as I should be. I have asked for a second opinion. In fact, my gastroenterologist suggested I get one. Another Sutter Medical practice has a no second opinion policy, so my only recourse is going to San Francisco, which is a possibility. Needless to say, my stress level is high. I have not even watched the video for my new interstim device which has to be charged weekly for 30 minutes. The Medtronic representative tells me, "I explained everything to you in the recovery room after your surgery." I don't even remember seeing him at all. Oy vey, always something.

Restless legs and iron anemia go hand in hand. The slow iron supplement is the way to go. If you don't tolerate oral iron, then you can request to visit with a hematologist (blood doctor) who can prescribe IV Iron. I took IV Iron and it really helped me. I get an infusion a year. We figured out the reason for blood loss were my very heavy periods as well as Crohn's disease. Have they figured out why you are iron deficient? Is it because you don't eat iron rich foods, or is it because you are bleeding from somewhere?

Thank you so much for this information. I actually had some labs done in the ER on July 4th of all days. My doctor has ordered additional labs to see if I am a candidate for iron infusions as my blood counts are not low enough as before when I received transfusions. Because of my dilated liver and pancreatic ducts I have no appetite, frequent nausea and chronic diarrhea. Labs at the ER showed I am under nourished, and honestly I was not surprised. I recently started taking some over the counter remedy for leg cramps and that has helped. I believe I will breathe a little easier once my MCRP is completed in August. It has been a long and frustrating road.

I had an MRI for my back and it showed up atrophy of pancreas and diffuse dilated duct of the pancreas. No visible mass. Then had a CT scan of pancreas and it showed a dilation of 6 mm. Still no visible mass. It also showed granulomas in lower right lung and granulomas scattered through spleen. Also showed fatty liver. My PCP is sending me to a gastroenterologist for further testing. PCP mentioned putting a camera down my throat and looking from the inside might be a good idea. Having virtual call tomorrow with gastro doc. Any specific questions I should ask? I have no symptoms. I have had Modified Duodenal Switch surgery 5 years ago. I don't know whether to be worried or not!!

My husband had dilated bile duct and a 7mm lesion found by MRCP, but EUS test was negative. Could I check if EUS has high false negative and we should seek second opinion and another EUS or ERCP? Recently, there are more symptoms, such as no appetite, feeling full and bloated, and slight loss of weight, probably a couple of pounds in the recent months. Also had diarrhea for no reason for several weeks, but now is gone. Here is the history of the findings:

Nov 30, 2021 Ultrasound: Dilatation of the common bile duct at the porta hepatis measuring 9.6 mm, of uncertain etiology
Jan 31, 2022, MRCP: Minimal dilatation of the common bile duct which abruptly tapers at the distal aspect where there is a questionable 0.7 cm T2 hypointense lesion
Feb 22, 2022, EUS: Mild dilation of common bile duct with tapering to ampulla. No ampullary or ductal lesion is visualized on EUS.
The pancreas is otherwise normal in appearance with a normal pancreatic duct.
April 7, 2022, MRCP: Unchanged mild prominence of the common bile duct at the porta hepatis with smooth tapering distally. Again noted apparent filling defect in the periampullary common bile duct lumen, near the identical to MRI 1/31/2022, would favor artifact given unremarkable ERCP and normal labs in the interim
Aug 30, 2022, MRCP, results pending.

We live in San Diego, California. UCSD and SCRIPPS are two major medical systems in the area. Does anyone know which system is better and more experienced with pancreatic cancer diagnosis and treatment?