Grade 1 Non-functioning (NF) NET

Could you give detail about spleen sparing. My doctor did say she could preserve my spleen but has recommended the removal to evaluate more lymph nodes for pathology testing. I'm tentative schedule for Sept. Thanks Ken

Hello Ken,
I had a spleen sparing robotic distal pancrectomy in January 2023 for a well differentiated stage 2, Grade 1, 1.9 cm tumor with multiple positive lymph nodes, (6 of 8 positive) My tumor was found incidentally, in April of 2022. I chose the wait and watch approach for 6 months. During that time the tumor grew a small amount so I had surgery.(I was worried about the possible life altering results of such a big operation on a tumor that was not causing physical symptoms… However hindsight is always 20/20 I wish I would’ve had the surgery earlier rather then later(due to the tumor growing !!!!) I wish I hadn’t let the fear lead me to wait for 6mos) we all are each unique individual! My recovery was blessedly easy, shockingly easy. ( In my mind I had built that surgery up to be something so formidable, and difficult to recover from.) I am no super human, just your average run of the mill human. Not super fit, and not young either. I suffered no diabetes, no food intolerances, and no need for digestive enzymes. I still get MRI’s every 6 months but so far, that is all I am doing, and needing to do at this point. Best of luck!!!!

This is wonderful!! Enjoy your life and get the best of it!💜💜

Hi, Pavlina,
No, nothing. After my surgery was over, I saw a specialist in PNETs in Portland and because I don’t have any tumors, he didn’t put me on anything. They thought about getting me into a chemotherapy trial for NETs but I missed the window. He wasn’t sold on it doing anything anyway.

They think I probably won’t have any reoccurrence anywhere, and every scan that comes back clean increases the chance that I might be done with cancer. That is my hope.

Scott

Great news, Scott! Are you having any treatment? Lanreotide/Somatuline? Thanks! Be well!
Pavlina

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

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.

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! 💜🦓

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 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?