Anyone have/had BD-IPMN?

Thanks for the added information, @fionac. I suppose you have already had an upper endoscopy and/or a swallowing study for the swallowing difficulties?

I took a look at my most recent MRI and see that there are three listed in the MRI. One is .9 and that is the largest. As I said, these have been showing up for many years now. The Lipase blood test is within normal limits.

The important thing is not to put too much emphasis on one particular test but to look at it from different angles. I think the oncologist, or your PCP should be agreeable to doing the Lipase blood test and if that is within normal range it might help to put your mind at ease.

Keep asking questions and keep researching. I know that anything out of the ordinary with the pancreas can create panic but try your best to approach this as calmly as possible. I know that this is easier said than done. I've panicked myself and I know that it is not easy to be calm, especially when you are first diagnosed.

Of course, it is always your right to get a second opinion if you feel you are not getting answers to your concerns.

Can you tell me more about the Lipase blood test?

Being seen at a pancreatic center of excellence is key. I live near NYC or no difficulty with being seen at a top pancreatic center of excellence. A local oncologist is a good start, but wouldn't accept as definitive. I helped my brother research for resources in North Carolina. Because of my history of pancreatic cancer and BRCA, and his status as a BRCA carrier, I encouraged him to pursue screening. He started by seeing a local gastroenterologist who did an endoscopic ultrasound. The gastroenterologist suggested a follow up CT for screening. I do not see anywhere that CT is advised for screening for pancreatic cancer (repeated radiation exposure) so I have encouraged him to seek a higher level of care for ongoing screening. The closest center of excellence to his home is Duke University. We looked through the gastroenterologists to see who might have the needed expertise and found two with an interest in pancreatic cystic disease and screening high risk individuals. Definitely need to do your own research in seeking experts. Sometimes a local doctor will know where you can go in your area so worth seeing what the oncologist suggests.

I think everyone who participates in this forum would agree about the importance of finding the best resource you can access. The group can give feedback on their own personal experiences. Hope you will find an expert to help you. Self advocacy is essential!

Some resources:
Listing of 155 National Pancreatic Foundation accredited center of excellence
https://pancreasfoundation.org/patient-resources/
Pancreatic Cancer Action Network
Can call or contact on line and they will be able to help find resources local to you
https://pancan.org/facing-pancreatic-cancer/patient-services/contact-us/
American Gastroenterological Association
Guidelines for Screening for Pancreatic Cancer
https://gastro.org/clinical-guidance/pancreas-cancer-screening-in-high-risk-individuals/
National Library of Medicine
Scientific review of the topic of screening
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6390120/#:~:text=Screening%20of%20patients%20with%20IPMN,%2Dderived%20and%20%2Dconcomitant%20PDAC.
TOP CENTERS
Memorial Sloan Kettering Cancer Center, New York City New York
https://www.mskcc.org/cancer-care/types/pancreatic-cysts/treatment/pancreatic-cyst-surveillance
New York University Langone, New York City, New York
https://nyulangone.org/locations/pancreatic-cancer-center/pancreatic-cancer-early-detection-prevention-center
Mayo Clinic, Rochester Minnesota
https://www.mayo.edu/research/centers-programs/pancreatic-cancer-early-detection-research-program/overview
Johns Hopkins University, Baltimore Maryland
https://www.hopkinsmedicine.org/health/conditions-and-diseases/pancreatic-cancer/pancreatic-cancer-screening
Massachusetts General Hospital, Boston Massachusetts
https://advances.massgeneral.org/digestive-health/video.aspx?id=1132
MD Andersen Cancer Center, Houston, Texas
https://www.mdanderson.org/patients-family/diagnosis-treatment/care-centers-clinics/gastrointestinal-cancer-center/pancreatic-cyst-clinic.html
Pancreatic Cancer Early Detection Consortium
https://precedestudy.org/
Any one of the 30 participating centers should be a good bet for an especially strong center. The participating centers are listed on the home page

The Pancreatic Cancer Early Detection (PRECEDE) Consortium is an international, multi-institutional collaborative group of experts to increase survival for pancreatic cancer patients by improving early detection, screening, risk modeling and prevention for those with a heritable risk for pancreatic cancer, through a novel model of collaboration and data sharing. PRECEDE’s mission is to transform the early detection and prevention of pancreatic cancer, with the aim of increasing the 5-year survival rate from 10% to 50% within the next 10 years. With over 30 leading academic medical centers across the globe, PRECEDE has assembled the largest high-risk patient cohort, with longitudinal clinical data and biospecimen acquisition and tracking.

It's almost 2 years later. How are you doing?

I will share my story below. My question to you is what are you seeing or feeling besides the IPMN that concerns you of having pancreatic cancer? That by itself is not a "worrisome feature."

They found my IPMN (a single 1.3 cm) early 2022. I had an EUS with biopsy early 2022. Per the request of my PCP I had a second opinion EUS with biopsy at MD Anderson in Houston (summer 2022.) Both were classified as IPMN but not communicating with main pancreatic duct (no worrisome features meaning a reason to look deeper for cancer.) They followed me with MRCPs at 6 months then a year. My Lipase and Amylase levels were normal but I did not feel well so my gastro had me do a fecal Electees (sp) which showed I was very deficient in pancreatic enzymes. I take Creon 24,000 IU with every meal.

Last year I moved to a new area and found a new set of doctors. My new gastro did the annual MRCP that come back with a reading of almost 4 cm for the cyst they had been monitoring, Now we have worrisome features (rate of growth AND over 3 cm) plus a new one of 1.4 cm. BTW all on the head and uncinate. January 27 of this year he performed an EUS. He only did a biopsy of the new one. The original IPMN of 4 cm are actually 2 sitting side by side making it look like one large one. One is definitely non-cancerous. The second he was concerned on touching it for fear of setting off a severe bout of acute pancreatitis which happened to me after Anderson. The biopsy of the new cyst was performed since it was on the outside edge of my pancreas AND it had a very small nodule in it (also a worrisome feature.) Biopsy came back showing reactive cells and a high CEA rate. The EUS (endoscopy ultra sound that can get a great look up close of the pancreas and cysts) also showed that the rest of my pancreas was shot.

I am having a total pancreatotomy in the next few weeks.

Get a good gastro, have a EUS to get a baseline to compare to MRCPs, enzyme testing as well. Watchful waiting. I have gone 3 years and just now have the need for surgery, hopefully early and no spreading. I am not yellow. I have not lost weight. I will say that the very beginning concerned me but once I understood the process and felt confident that I had very smart caring specialists to monitor I relaxed and just had the MRCPs to monitor until the time for a EUS that says lets take it all out BEFORE it can go crazy.

BTW - 8 years ago they found I had lung cancer. Again, I was blessed to find it early. They removed my top right lobe and lung life is great. FYI - lung cancer does not move to the pancreas.

This is a lot of information, but it was and is my journey that so far has gone great. Hope it helps you.

Hello @tls

I appreciate the information you provided. Your suggestions about getting a good GI specialist and a baseline EUS are good suggestions for all of us. Will you continue to post with questions and concerns? I would especially like to hear from you again after the total pancreatectomy.

Wishing you all the best!