Grade 1 Non-functioning (NF) NET

Matt, thanks for your story. I'm going to be positive and in 4 months be almost healed. Dr's. stated curative procedure, but still concerned. I'll reach out again in December. Thanks Ken

Hi @beaglebass - just joined this group today and noticed your post. I was diagnosed with MEN1 back in 2019 after an incidental finding of 5 pNETs. I ended up getting a total pancreatectomy with the associated removals (spleen, gall bladder, etc.) The adjustment was a little different for me as you become a fragile diabetic on insulin and need to use enzymes for digestion. Took me about 4 months to get it dialed in and doing ok after almost five years. Folks say your life is over, and I just tell them, no, it's just different now. Happy to help if you need advice.

Good luck with your surgery. It looks like they have a good plan for you. Keep me posted.

Post my surg, I was in hospital for five days. I was on liquid diet for 2 days- then moved to a bland diet ….. jello, mashed potatoes, eggs. Gloucose testing a few times a day. After five days in hospital, my gloucose was steady & my digestion was working well. I was released with no dietary restrictions. (I have no idea if that is usual or not). Their advice was eat green vegetables and lean protein; which I began on day six after surgery.
I was told that there was a chance that I could become type 1 diabetic and that I might need enzymes. Neither of those complications have happened to me in 4.5 years.
I am careful with sugar, but I haven’t eliminated deserts completely. I never drink alcohol.
My exercise routine is not consistent- other than walking my dog a couple miles a day.

It’s not what you asked but on another note- I did not take enough time after surgery to recuperate. I had care for 3 weeks then I was back to work and on my own. I was performing physically strenuous tasks way too soon after surg, and I developed multiple ventral hernias. I didn’t want mesh implanted, so I’ve just left the hernias alone.

That's great news. I'm happy for you. I'm planning my distal pancreatectomy and splenectomy after labor day. Dr. Katherine Morgan, MUSC robotic procedure. Then scan ever 6 months. ? How long after surgery did you begin eating a normal diet? Dr. stated I might need a pill for diabetes possibly enzymes pill, 25% chance per doctor. If applicable reply please?

Hi Ken, Hope all is well with you. I received all good news from my bloodwork and scan. Both my labs and scans show no change to my pancreas or lung in the last six months. Which would indicate that I’m 4.5 years clear - no recurrence - after distal pancreatectomy.
Lizzy

Also, write down what you need to during the appointment. This should be less over time hopefully. Nothing like remembering the most important question then forgetting the answer. Been there done that.

That’s a perfect idea, because my children have questions too! Thank you again. Writing my questions and concerns down will definitely ease the stress.

Initially, I would write my questions down so I would not forget. The entire process can be intimidating and overwhelming. Try to take some of the pressure off of yourself.

Thank you! I really needed to hear that because I do get intimidated and I don’t ask.

Hi when you see your onc team, ask lots of questions regarding the possible intervention n' treatment before it gets worse and what is the plan? Sometimes you have to bombard them with questions as not all Drs are proactive with decision making.