What To Do?

Posted by annabelle61 @annabelle61, Jun 11 2:12pm

Incidentally diagnosed with several IPMN’s…Gastro has decided to monitor every 6 months using MRI.

Wondering if this is the right approach?

No stage or amount of time left given…just a kinda of wait and see attitude.

Scheduled for next MRI on 06/19/23 and am terrified it’s now cancer.

Any info or suggestions wld be greatly appreciated.


Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

This is info from Johns Hopkins on IPMNs https://pathology.jhu.edu/pancreas/ipmn and the Fukuoka guidelines for diagnosing and treating IMPNs https://www.endoscopy-campus.com/en/classifications/impn-fukuoka-classification-guidelines/
I am not a healthcare professional; however, I understand the Fukuoka Guidelines are considered the current standard of care.
Also, Johns Hopkins has a Pancreatic Cyst Clinic (an IPMN is a type of pancreatic cyst) https://www.hopkinsmedicine.org/gastroenterology_hepatology/specialty_centers/pacnreatic-cyst-clinic.html
Good luck.


I would suggest having the Whipple to remove all the IPMNs (and if there are several, you may have to have your entire pancreas removed). Granted, this is a major surgery that can take months to recover from and you will become a diabetic for the rest of your life, but it is 100% worth it if that means you avoid getting pancreatic cancer. Dealing with insulin shots and have Creon pill supplements to help with digestion is way better than chemotherapy and dealing with a very tough cancer. I'm not sure of your age, but I would push for this even harder if you are under the age of 70. Just my experience with my Mom who had cancer from a rare type of IPMN. We caught the IPMN when a part of it already became cancerous, so we had no choice, but to do the Whipple. We wish we could have been in your situation and found out about the IPMN long before it became cancerous. It would have been stopped her cancer from coming- now she is stage IV.


Just my experience to relay. I had surveillance on my IPMN for a year. In retrospect, it probably should have been six months. After a year, the cyst only grew from 2cm to 2.1cm, but main duct had dilated significantly. At that point, I had a successful distal pancreatectomy, but the resected portion of the pancreas had cancer. So I was stage 1, and even though the IPMN was deemed benign by the EUS, it was suspected to be involved in the development of the cancer. Everyone has a different experience, but I hope this is somewhat helpful.


There are several hospitals that have pancreatic cyst surveillance programs. Johns Hopkins is definitely an excellent one. Columbia, Memorial Sloan, and Mayo have them too.

I don't know where you live, but google "Pancreatic cyst surveillance program" and start looking. Get a second opinion on what you are dealing with. Get another perspective. If the second opinion concurs with the first, you can move forward with more confidence and less fear. If it doesn't, you can think about how *you* want to handle your condition.

Please sign in or register to post a reply.