Anyone have/had BD-IPMN?

Wow, this is SO helpful and informative!! I wil make sure I get the gene testing. I did not know anything about it until I saw folks talking about it on here. I absolutely do not want to w&w. That is how my sister passed from breast cancer 5 yrs ago. I want to be aggressive because this cancer is aggressive. Did your IPMN turn into a PDAC? That is my fear. It is taking weeks to get scans and get into doctors! This is precious time to me. I feel like nobody is taking it seriously because it is only 1 cm. But I also have tiny “hypodensities” on my liver and spleen that I don’t know what they are. The last gastro told me to do nothing except get another scan in a year! No bloodwork, no MRI/MRCP, nothing. My PCP had to order the MRCP. Now I’m trying to get into 2 different pancreatic centers and they took all my info and said they’d call me for an appt after they’ve “triaged” my chart…. like time is not an issue. I am so frustrated and scared. I know I have PC. I just know. I have every symptom except jaundice. I am a nurse. I just know I have it. So every week that goes by without being under the right surgeon’s care is devastating to me. I’m so sorry for all the negativity. It’s just where I am at the moment. I really appreciate all the info! I will take it all to heart!

Yes, I still have the IPMN and it is surveilled twice a year by MRI. There is no treatment for shrinking IPM’s…it shrank on its own. It is a BD-IPMN and impossible to biopsy as it is too small and inaccessible. It is causing no issue. To try and biopsy it could result in acute pancreatitis which if it develops to chronic pancreatitis- a known risk factor of developing pancreatic cancer. So the risks far out way any benefit.

IPMN’s were only first discovered in the early 1980’s as a result of imaging by CT scan which was introduced in 1979. IPMN’s are generally found as a result of imaging for an unrelated issue. It turns out many people are unaware they have them including those that received a CT scan. I have five older friends that had abdominal CT or MRI done for issues more related to the intestine and there on the report was noted an IPMN. All were unaware an IPMN was found. Their GI specialist never pointed it out. So the first question I asked each of the five was if there was pancreatitis or pancreatic cancer in the family. Only one had history of pancreatic cancer (her Mother passed from it in her early 50’s).

I arranged an appointment for her with a noted MD in NYC who was a geneticist specializing in this area. Genetic testing was done and it was found she had a Lynch syndrome mutation. That finding led to other family members being tested to assess their risk for colon cancer.

For the first year she was surveilled at 6 month intervals. After that she was checked yearly and now it is recommended every two years. No change has been observed in five years of surveillance. It’s location, appearance and no growth does not warrant biopsy or other aggressive action.

@pattyclaire , The two genetic tests I'm aware of are 1) Invitae, which detects "germline" mutations you inherited from a parent; and 2) Guardant 360, which detects "somatic" mutations in DNA shed by cancer cells. The Guardant test may detect mutations for which it can't determine the cause (inherited or shed by a tumor), but a positive mutation reported in either helps identify your risk and plan your treatment. I think they both take 2-3 weeks to get initial results, so they can/should be performed while you're waiting for other stuff to get done, if possible.

We'll never know for sure what caused my recurrence. During the Whipple, my surgeon/pathologist saw cancer at the margins, then went back to cut out another half inch of pancreas, which was declared clean. After 3 months of clean scans and blood tests, MRI in the 4th month picked up a new 2 cm "lesion" where the remnant pancreas was stitched in to the old plumbing. Pretty fast growth in 3 months. Two prominent surgeons have told me the intraoperative pathology is not perfect; sometimes malignant cells remain present but out of sight.

I had an EUS biopsy of that lesion 3 days after the MRI, and it was all negative. They reported it as pancreatitis and recommended another blood/DNA test and MRI in 6 weeks. The doctor who took the biopsy was positive he got tissue from the appropriate (4) locations, but another doctor told me the post-Whipple anatomy and the fact the lesion was growing on the outside surface of that plumbing junction made it really difficult to reach.

Anyway, 6 weeks later the DNA and CA19-9 and MRI made it pretty clear the lesion was cancer, and imaging also spotted another metastatic tumor elsewhere in my abdomen. We don't know if that second tumor emerged from something that had escaped before the Whipple or after, but it cancelled any realistic chance I had for a surgical option.

I am not a fan of waiting and watching!

Thank you for all that!! So sorry to hear about the metastasis and everything you have been through. Sounds like you have found a surgeon you trust and that is my hope for me. I think it makes all the difference.

I guess the problem I have with W&W is that there is absolutely no way to know that it is not cancer without a biopsy. And I certainly want to know if it is cancer before it gets any bigger. The finding was incidental but also a blessing if it is in fact cancer and not a harmless IPMN. Believe me, I would love to just ignore that I have it and go on about my life (except for the 2 scans a year) but I am a nurse and I have seen a lot! And mistakes are made on imaging all the time. Pathology is the only thing that will give me piece of mind. All these doctors keep dismissing it because it is “so small” but I think if it were on their pancreas or the pancreas of their child/wife/loved one they may feel differently.

I have had some dull back and abdominal pain for a while. I grew frustrated with my PCP who blowing me off. I paid a lot money to get a full body MRI and they found a .8mm side branch IPMN. Everywhere I look says a tumor of this side would not be symptomatic. I don't know I believe that given I have rule out just about everything else causing mine. I have done a lot of research and I am not impressed. From what I can see, they don't biopsy these unless they have worrisome features. It is a watch and wait game. I am not impressed since I have read elsewhere that pc can go from stage 1 to stage 4 in a year. I have my first appointment with oncology next week. It is unlikely they will do anything more than watch and wait. They do not take into account what this watch and wait does to a patient's anxiety. I had a CT in 2020 that showed nothing. Now, 3 years later, I have 8mm SB-IPMN. I also cannot help but wish I had never gotten a COVID vaccine.

Hello @fionac and welcome to Mayo Connect. I am glad that you found this forum. It is a great place to receive support and encouragement.

I've had IPMN diagnosed for 10-plus years now and also do the watch and wait. They were first discovered incidentally, when I had a CT scan for something unrelated. As I have a history of cancer of the upper digestive tract, they were first followed yearly by an MRI and now every other year.

There has been little change. You mention COVID vaccine. I have had the original two vaccines and also three boosters. There have not been any changes in my IPMN. Needless to say, because of my cancer history the presence of IPMN was a cause for anxiety for me as well.

I'm glad to see that you will be seeing an oncologist. Were you referred to the oncologist or did you self-refer?

As you have concerns, when you see the oncologist, you might ask for blood work that would check for pancreas functioning. Perhaps that will help put your mind at ease. Have you had any blood work done previously for pancreas functioning?

I look forward to any other questions or concerns you might have. I hope you post again and especially after your appointment with the oncologist.

Thank you for replying. I was referred by my PCP, but reluctantly. She actually told me she didn't know if they would take my referral. I am not sure why. The screening MRI said I may have an .8 cm side branch MRI. She caused me quite a bit of anxiety for several days thinking I would not be seen. I have since changes PCPs.

I guess a small part of me is still hopeful, since my screening report said "may" be a IPMN, that it will be less serious. Praying. I have always done everything I can to stay healthy. My mother died at 50 of lung cancer. I really do not want to leave my girls that young. I am 49. So I am praying.

I am thankful for your suggestion on the blood work. I will ask. It cannot hurt. I also found an external lab that will do them, but I will have to pay out of pocket. So if they doctor refuses, I will find a way to pay for them. I am hoping he checks things out.

One concern I have is that when I wake up each morning, I fell like something is stuck in my lower abdomen. I do stretches and it tends to get better through out the day. I also feel a difference swallowing on my right side, but my MRI did now show anything abnormal with the neck. I am hopeful these are not related.

I am happy that you are doing ok for so long. Thank you again for the reply and the hope.

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.

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.