Anyone have/had BD-IPMN (branch duct intraductal papillary mucinous)?

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.

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?

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?

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.

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.