Anyone have/had BD-IPMN?

After unexplained weight loss at age 66, I was diagnosed thru MRI as having a 2cm MD-IPMN in 2021. I had an EUS with fine needle aspiration which came back benign. Decision was made to revisit in a year. In 2022, the cyst was 2.1 cm but duct showed increase dilation. So, I had a distal pancreatectomy, and the pathology showed cancer in the resected portion. All margins clean, no spread, stage 1. Six months of Folferinox and it still somehow spread to my liver. The IPMN was a suspect in the development of the cancer, but it was not conclusive. Everyone is different and this is a tricky cancer. Good luck and best wishes.

Pancreatic cancer is tough and generally recurs quickly even after a successful Whipple in which margins and lymph nodes are clear. My Mom's cancer started from a different type of IPMN and despite a successful surgery with only a 1.1 cm of cancer in the IPMN, the cancer recurred in the peritoneum about 18 months later and she's been bravely fighting it ever since. I would encourage you to have the surgery and remove the IPMN now regardless of the biopsy results. It's not worth taking a chance. The Whipple is hard, but if you have a good surgeon at a top hospital, you will get through it fine. It's much worse dealing with chemo and a potential recurrence later on.

Thank you! So sorry that your Mom is going through this. My daughter is so scared and upset. She is terrified of losing me. Unfortunately I am not a candidate for Whipple because I’ve had gastric bypass in the past. I don’t trust biopsy results and do still want it out, but I am concerned that they won’t do it because it is only 1 cm. Did your Mom’s IPMN end up being cancer? Did the biopsy show cancer?

I am sorry to hear that for you. What is your treatment plan now that it has spread? Do you wish you had it resected when they found it instead of waiting a year? I do not want to wait, if I have a choice. How are you feeling now?

I am now on Gemzar and Abraxane once a week for three weeks, then one week off. I have only had four treatments thus far, but it seems to have less side effects than Folferinox, for me anyway. Sometimes I think I should have had it resected in 2021. I actually didn't expect the surgeon would decide to surveil for a year, maybe 6 months, but I didn't object. The surgery is a little involved and may seem extreme for a benign cyst, but I do have family history of PC that was known by the doctors. Doctors are usually conservative, and everyone's experience is different. I was in the hospital for five days, and recovered at home, and it took three months for full recovery. I was lucky not to have complications. Some patients emerge after surgery with diabetes and digestive issues. As I understand it, I had about a 60% chance of a clean scan after clean surgery and 6 months of chemo, but I guess some cancer cells evaded the Folferinox and found my liver, so instead of plan for cure, I am on a plan for control. Next month I get new scans and blood tests. I have leftover fatigue and peripheral neuropathy from the Folferinox and I eat small meals more often during the day, but no pain, and I am taking it one day at a time, and try to make the most out of each day. When to have surgery is your decision, but try to get as much information as possible and consider second opinions. Best wishes.

Thank you so much this is so helpful! So sorry you are going through all this. Glad to hear you have no pain and no complications from surgery. I know it will be tough to get a surgeon to take out a benign cyst but I really do want it out. I will get a second opinion though. Thanks!!

I had a BD-IPMN discovered 5 years ago during a routine surveillance scan as I had the Whipple procedure in 2012. The IPMN measured 8mm and is in the tail of the pancreas. I was familiar with the international guideline for monitoring IPMN’s but because I already had the Whipple for an acinar cell tumor in the head of the pancreas, I went for multiple (4) opinions all covered by health insurance as I wanted to make sure the guidelines fit my situation or if surveillance needed to be customized to fit my situation.

I went to an NCI designated center of excellence in cancer care with a pancreas program that had a surgical oncologist who specializes in IPMN management. Surgery would leave me as a type III brittle diabetic and would need insulin and pancrealipase for life. There was very little risk of it becoming malignant. The last 3 scans showed shrinkage to 7mm.

There is an international study (EA2185) on comparison of IPMN surveillance methods. Enrollment is open to anyone with an IPMN whether a BD or MD IPMN. More information about this surveillance study is at-
https://blog-ecog-acrin.org/now-enrolling-ea2185-trial-to-compare-the-clinical-impact-of-pancreatic-cyst-surveillance-programs/

Amen

This is so helpful, thanks! So you still have the IPMN and it has shrunk to 7 mm? Did you biopsy it? Did you take any meds to help shrink it? Are you continuing to monitor it with scans then, and if so how often and what type of scans? Sorry for all the questions! So grateful for all this personal info and education tho!!

@pattyclaire , I'm not a doctor, but someone who experienced recurrence after a clean Whipple for my PDAC. Some of my pre-Whipple MRIs indicated what I vaguely recall as side branch IPMNs (in addition to the main tumor in the head of my pancreas).

My first question for you is whether you've had genetic testing to see if you have any germline mutations (KRAS, BRCA, ATM, etc.) that predispose one to PC or have close family members with a cancer history (particularly those that are genetically similar to PC).

If either of those is true, you should push for quicker/deeper treatment over simple surveillance.

Since my cancer returned first at the Whipple site, my suspicion is tissue that appeared to be cancer-free at the margin either wasn't, or if it was clean at the time, then it simply turned cancerous shortly after the surgery.

Either way, I now consider that my pancreas was basically "defective" at the time and with no potential to get better, only stable or worse.

In either of the two latter cases, I became diabetic (needing insulin) shortly before the Whipple and dependent on enzymes after it.

So, one question you might ask a surgeon or two (please get multiple opinions!) is whether a is a better option for you than a partial, if you have the mutations or family history that increase your PC risk.

Total pancreatectomy would eliminate the chance of ANY pancreas turning cancerous later. Even if it leaves you on insulin and enzymes for life, it will be a longer and more tolerable life than if you're adding chemotherapy or radiation to the mix.

Repeating: I'm not a doctor, but if I knew 2 years ago what I know now, those are tests I would be taking and questions I would be asking.

Best wishes to you!