Grade 1 Non-functioning (NF) NET

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

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

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

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!!!!

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

Ken, it is not always possible to spare the spleen. My surgeon said I had a 50/50 shot at preserving my spleen. I had to prepare ahead of time for the possibility that the spleen would be removed . I had to get about 6 immunizations ahead of the surgery date. I got lucky. It is not always possible to preserve the spleen. It all comes down to your unique situation, and the skill of your surgeon . I personally would opt again for robotic surgery for its precision, guided by a highly trained surgeon. Good Luck!

Hi @pavlina60! It's great to hear from you about your journey. I have found that physical activity is the most helpful for me and do also follow a low carb diet (nuts, veggies, meat, etc. - I have also learned to love cauliflower in all of its forms - riced, mashed, etc.) The other thing that I found with Creon is that the fat content of the food can affect the glucose spikes - more fat = slower absorption and lower carb impact over time.

I would be surprised if your Doc would order a med for your A1C of 6.6. My endo's goal for me is to be 80% in range of 70-180 daily and 180 is about a 8.0 A1C so I would think you are doing great! If you have a CGM, perhaps you can experiment on food/activity level to dial in your target?

Thanks - happy to help. I really do feel that we can all help each other with our experiences of what works and what does not and what medical resources we can share to point folks in the right direction. Someone did the same for me 5 years ago that led me to a second opinion. The surgery was the same but the aftercare and management of the condition is completely different. And after all, my PCP tells me that I am the healthiest sick guy he knows!

Being the "healthiest sick guy he knows!" is quite the compliment! Congratulations on living well, in spite of serious health issues.

Might I "tag" you when there is a new member struggling with the same issues that you have?

Absolutely!