MEN 1 Pancreatic cyst size increased

I have zero medical training, but if you were diagnosed 5 years ago, my math says you've already "waited."

What I hear a lot about cancer "progressing" on one treatment and becoming time to try something else is if a _tumor_ has increased in size by 20% or more in its largest dimension. Your _cyst_ (from 3.2 cm to 4.1) looks like a 28% increase to me.

I've seen protocols and criteria for monitoring IPMN cysts, but really no nothing about MEN1.

At a minimum, I would recommend erring on the side of caution -- find a pancreatic center of excellence and get a "tie-breaker" third opinion as soon as possible, and ask them to do all the relevant genetic, blood, imaging, and other tests possible to support their recommendation.

If nothing else, you'll have a better idea what's going on, possible get management that prevents other complications, and have yourself an "in" at the center of excellence in case you need them in a hurry later on.

Thank you!

Hi @katiekee, I added your question to the Neuroendocrine Tumors support group as well (https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/).
I'm also tagging members like @worriedlovingwife @markbrinkley @djsutton205 @kbfan19, who have experience pancreatic MEN-1). You might be interested in this related discussion:

- Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?
https://connect.mayoclinic.org/discussion/men1/

It it so hard to know which advice to follow when doctors do not arrive at the same treatment options. Have you considered getting another option? Have you consulted with a neuroendocrine tumor specialist?

The team at Penn do good work.

Hi @katiekee - I noticed your post and thought I might be able to help. I was diagnosed with MEN1 5 years ago and have had three parathyroidectomies, a total pancreatectomy, splenectomy, etc. It was first discovered incidentally on CT for a(nother) kidney stone and they found 5 lesions on my pancreas of various sizes. Due to the location (tail, head, and body), it wasn't possible to remove them and spare the pancreas. Without knowing your details, I would not wait too long to see if surgery was possible as while MEN1 tumors are slow, they are mostly inevitable as our genetics control the situation.

One thing I learned throughout is to trust your gut if you don't think you are getting the answers that make sense and seek out other Doctors until you find the one that "feels right."

My husband started with a 4.8 cm adenocarcinoma of the pancreas last April,2023
After radiation and continued chemo,no surgery as it involves blood vessels,
Now the tumor is 3.3 on last scan 2 weeks ago
I'm hoping this chemo protocol he's on keeps shrinking it✝️🛐

Hi @bceg1969. I am glad to hear that your husband is making forward progress. It certainly seems promising to hear that the tumor is shrinking! If it helps, one thing that helped me through the journey was a book recommended by a friend who is a three time cancer survivor. The book was written by Dr. Maxwell Maltz and is called Psycho-Cybernetics. It is a self help book that helps people visualize positive outcomes that come from a positive focus. I still use some of the techniques in it to this day when times are tough.