Grade 1 Non-functioning (NF) NET

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

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?

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.

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.

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

Hello @matt2024 and welcome to the NETs support group on Mayo Connect. I appreciate you sharing about your history with pNETs. Your comments offer encouragement and a great perspective.

It sounds like you are doing well, now. Are you still using enzymes? Any problems with digestion or sugar levels?

Hi @hopeful33250 - nice to meet you. I am doing well. Most days are good - some are challenging but isn't that the truth about life in general. 🙂 I will use enzymes for the rest of my life - I use 3 x 36,000 Creon with meals and one with snacks. Aside from being expensive (my first 90 day fill was $2,700 before I hit my deductible), they really haven't created any problem for me. I am consistently in the mid 6's for A1C and attribute that to diet, exercise and my CGM/pump combo. The biggest thing for me is to factor in carbs, fat content, and insulin and time it right. It's a bit of an art form but can be managed. Highs I knock down on the elliptical and lows I use juice for a quick boost.

I was devastated when I learned of the pNets but looking back (thought I was a goner), I took it one day at a time and let the doctors help me manage it.

Hello @matt2024 ! I too have pNET but with liver metastases. Had distal pancreatectomy ( with spleen and gallbladder removal) an am on Lanreotide/Somatouline 120 mg every 4 weeks. Even though I have some pancreas left my blood glucose is rising (~140 in the morning, A1C 6.6). It is also a side effect of my treatment. I try to walk daily and avoid carbs, no sugary 'treats' but still have elevated BG. I think on my next physical my PC will put me on medication for that :(. I have been diagnosed in December 2022, had surgery February 2023. Do you follow any specific diet? Btw, I also take Creon for digestion. Thank you! And yes - our lives are not done - just different and we are adjusting! Hugs! 💜🦓

Hello @mat2024,

It sounds as if you have developed a really healthy lifestyle to keep the blood sugar in check. Your attitude has undoubtedly helped you.

I appreciate your encouraging words; it really does help others who are feeling overwhelmed.

Hi Ken,
I had a 5 cm PNET removed in March 2023. So, a year and a few months ago. It was grade 2-well defined. I had a distal pancreatectomy and splenectomy. I also had three of 10 positive lymph nodes. I was told to be careful with sugar and fat, I can’t say that I’ve been real faithful. I have not had to use enzymes, and my blood sugar is great. No diabetes. I am pretty much back to normal.

I have scans every three months with contrast and so far so good. No cancer in my liver at all so far.

Good luck with everything. To be honest, the surgery was rough, and it was a couple months before I started feeling normal again. But you’ll get through it. For me, it looks like they found it in time before it metastasized to my liver, but I will still get scans every three months for the first two years, then go to six months. I just had a brand new (first) grand daughter, so I’m praying for quite a few more years. 🙂

If you have any other specific questions, feel free to contact me.

Blessings,
Scott