r/ChronicPancreatitis

Hi everyone! I'm Olivia from Mission: Cure, a nonprofit dedicated to accelerating research and developing better treatments for pancreatitis while improving the lives of people impacted by the disease.

We're excited to announce a free, one-hour webinar, "Your Guide to Pancreatitis Research & Clinical Trials" on Thursday, August 27 for anyone who wants to better understand how pancreatitis research and clinical trials work.

Topics:

The different types of research studies and clinical trials (including observational studies, pilot studies, and clinical trials)
How patients and caregivers can participate in and contribute to research
Actively recruiting trial opportunities for pancreatitis patients
Updates on promising pancreatitis research and clinical trials
How Mission: Cure works with researchers and industry to help accelerate the development of better treatments
Ways to stay connected through the Patient Ambassador Network

Plus, we'll have a live Q&A at the end of our session!

Date: August 27th, 2026
Time: 12 PM ET / 9 AM PT
Speaker: Joshua Henderson, Chief Cure Strategy Officer, Mission: Cure

If you're interested, you can sign up here!

Doctors recently found I (26y F) have a 2 cm solid pseudopapillary neoplasm (Frantz tumor) in the tail of the pancreas. They have recommended a distal pancreatectomy with a potential splenectomy.

Has anyone here had experience with Dr. Lily Victoria Sadaat at MSKCC? I think MSKCC has been very efficient and all the team acts very professionally, but it's all very straightforward and not as compassionate as I would've liked.
Has anyone here developed diabetes after both procedures? If so, how long after? And how much of the pancreas was removed in your case? I'm told only a small part of the tail would be removed, but I also know that's where the cells that produce insulin are.
Was anyone here able to keep the spleen without complications? I understand that the tail of the pancreas and the spleen are somehow connected, but I worry about taking out a completely healthy organ, and I know in some cases, doctors can keep it.

I'm also looking for a second opinion in Orlando, Florida, where my family is, because I've been reading about recovery and I don't know if a NYC apartment with no elevator is the best place to recover.

How soon after surgery were you able to take stairs? I live on the second floor.
Any recommendations for a doctor in Florida?

Thank you! Sending strength to everyone in this group.

r/ChronicPancreatitis

Learn more about pancreatitis research and clinical trials - webinar on August 27

Experience with distal pancreatectomy and splenectomy at MSKCC?