MRI MRCP - Cyst (IPMN) - Newbie

Thank you.
I have started a list of questions, but have not finalized them. I will await the return of my former rheumatologist from her vacation and seek her input. Your note and others make me feel less alone with my frustration in trying to get information from doctors. Not all doctors I seem are mystified by health issues. In other words, I guess whatever I have is something my PCP, gastroenterologist and the new rheumatologist do not understand or know how to best treat. I have little confidence in my PCP and have filed a grievance against the gastroenterologist because of the manner in which he has treated me in the past, and also for misinforming me about many things, including but not limited to my current bile duct issue. I had no idea what I was going to be up against when my doctor told me almost 3 years ago that the "wait and see" approach would lead to losing 25 percent of my weight and cause me to experience the symptoms which I currently have. I am not used to advocating for myself, but have had to learn to do so. I think it is a generational thing, at least for me. That saying, "the doctor knows best" has become an oxymoron, and I am finding that many I know are facing similar issues with their health issues. I understand doctors have more work to do these days, probably don't get reimbursed enough from Medicare and things of that nature. However, I still believe that "do no harm" should be front and center even if it means these people who chose to be physicians have to work a little harder, use a computer etc. I mean no disrespect, these are my observations based on my experience. Having said this, it is exhausting and I cheer you for staying on that 20 year path in an effort to get what you needed in an effort to find out what was going on with your body. And yes, I do want to know if there is a name for my condition. I came home tonight from a friend's place, removed my socks and was shocked at how swollen they were. I had asked my PCP about this a few weeks ago, and he had no answer for me as to the cause. Maybe the time is drawing near me to find a new PCP, but I will wait until I see the hepatologist in March before making a decision. I guess my therapist was on to something when she told me that when my PCP asked me a few weeks ago if I wanted a different doctor, that that was "doctor talk" for "I don't know what is wrong with you."
Without my art, my bread baking, and many other activities I engage in, I probably would have gone crazy by now.

I have been advised to consider Whipple surgery for currently benign IPMN. I am in very good health but main duct dilated 7mm. I have no underlying conditions but have been told so many things that I, too, am no closer to making a decision and I have been this way for 9 years, only had been told about this dilation 8 months ago..

Hello @frances007,

Your frustration is so understandable! I was on a path for about 20 years looking for a label to put on a neurological problem. I finally found it, but in the intervening years before the diagnosis I felt much like you. I had certainly given up on a "cure" but I was so content to finally have a name to put on the symptoms. I have a feeling that a label/diagnosis is what you are also looking for.

Keep on the journey. I'm glad that you have found baking bread to be a therapeutic endeavor. Being faithful to the process of finding a diagnosis does require patience and persistence. Do you have any other questions prior to your March appointment with the liver specialist?

I recently met with a rheumatologist who did not think that my bile duct dilation was caused by any autoimmune disease. Today I received a message that some tests showed negative findings of any autoimmune liver disease process. As you can imagine, this path I have been on has had so many twists that I feel like I need a new compass. I have lost 1/4 of my weight, have chronic diarrhea and nausea, as well as upper abdomen pain. I understand that the hepatologist I will see this March may be able to shed more light on my condition. I am an information junkie and the most frustrating part of all of this is that none of my current doctors are able to tell me what is going on or what has caused the bile duct dilations and cysts in my liver and pancreas. I am not feeling especially dismal, just frustrated with the lack of information or even theories. I want my doctor to throw me a clue, something to hang onto or look into so I have a better understanding of what has happened and is continuing to happen to my body.
I still greet each day with gratitude, continue to help others in my community, but the fear of the unknown has gotten a hold of me like tentacles and I cannot escape. I understand patience is a virtue, and I am my own worst enemy when it comes to being patient. I have been waiting patiently for nearly three years now, and know no more about my condition than when I was first told about it. Am I overreacting in some fashion? It is my nature to want answers, as we all want answers about our bodies. Not getting answers can be frustrating as well. We all know this feeling.
Maybe I will get my paints out tonight and paint a piece with a liver, something abstract. I have been baking all day, and this too has been therapeutic. I feel like I am channeling Martha Stewart with all this bread I have been baking. It really is quite good and easy. Bob's Redmill Artisian flour. No Knead Rustic Round. I have probably made 15 loaves in the past 2 months. For those who love bread but have never made it, it is an easy recipe and the bread is delicious.

Hi Mike,
Thank you for your reply. It sounds as tho you are monitoring and not considering a "preventative" Whipple as has been suggested for me. Had anyone offered you that option over monitoring? My CA19-9 had a value of less <2U/mL
Is that configuration of how your value reads?
I have been told that this IPMN in the head of the pancreas shows a 7mm dilation of the main duct? What if any is your duct dilated to?
Thanks in advance~ Bev

During what I thought was to be diagnosed as diverticulitis, a 3.9mm Cyst was found on my Pancreas during a CT. This was June ‘22.

Went to Mayo Rochester. Had a subsequent CT in July along with a MRI and EUS . Decided that a EUS biopsy was too risky as it was close to veins - but it did not have characteristics of cancer. CA-19 was ‘16’.

I had a video visit with a Mayo surgeon (Dr. Smoot) who said that my particular lesion was 85/15 chance of being benign. The risk is high as the cyst is located in the back and in the head of the pancreas. Noted that since I am a bit overweight I am in the class of 50% for complications - and even @ Mayo the mortality rate is 1-2%. Therefore monitoring was recommended.

Mayo decided that a followup was prudent in October. CA-19 was ‘15’. Contrast MRI was inconclusive.

Mayo recommended followup in January (here in FL) at the Jacksonville Mayo Clinic. Just got the results 2 days ago. It was determined there was no change and the CA-19 was ‘16’,…THANK YOU GOD.

Additional monitoring will be done in 6 months @ Rochester Mayo,…and if no change then every year,…

So Monitoring, although making me anxious is the route they are pursuing. Best of luck and prayers for you.

Dilated 7mm pancreatic duct was found incidental to a bout of diverticulitis in June of 2022. It had also been seen in 2013 when I had a kidney stone but I was not told about it 9 years ago. MRI/MRCP and EUS/ERCP in August of 2022 was benign. I have gotten 3 opinions, one doctor feels Whipple is inevitable. Another doctor feels it is not necessarily inevitable and a third feels I should have a prophylactic Whipple as I am in good health, no underlying conditions. Never had pancreatitis, no other symptoms. I am 70. Right now I am set up to monitor with an MRI every 6 months. I do have a pancreatic cyst at the head. Is anyone else monitoring these benign cysts and for how long? Thanks!

Branch Duct.

Thanks for your response. Were your lesions in the main duct or branch duct?

Because the cysts were located in the branch ducts, it was determines by a team of doctors to follow up with another MRCP in 6 months, which will mean it will be done in April of 2023.