Grade 1 Non-functioning (NF) NET

I had heard this is called scan-xiety!

Thanks!
Regarding blood sugar issues: Not yet, but it is being monitored.........
Also no digestive enzymes at this time.
I do get anxious every three months when it is time for blood work and the CT-Scan.

I appreciate our encouraging post, @suzyis7. Congratulations on your CT scans showing no recurrence. I'm glad that you had a well-trained surgeon.

Did the removal of part of your pancreas result in any blood sugar problems for you? I'm also wondering if you need to take Creon or other digestive enzymes.

In December of 2022, I had surgery for a P-Net, NF, 1.7 cm. on the tail of my Pancreas. Part of the body, the tail, and the spleen were removed. Also, 13 lymph nodes. Every three months, I have a CT-scam and so far no recurrence. (This was an incidental find.). The recovery , looking back, was not too painful. My surgeon was wonderful and had done his training at Mayo, so I felt very secure with him and his team. By the way, I am 83.

Hi, @matt2024 ! Thank you for reaching out! I am "almost"vegetarian- very little meat and ear mostly fish, sardines, some chicken, chickpeas, lentils and bean plus lots of veggies. I am carefull with those as I am also on blood thinners ( coumadin) for two previous strokes. I keep fat to a minimum, even though I take Creon ( only 1×24000 with meals; my snacks are mostly fruits). I will follow your advice for more physical activity now that weather is getting better ( I live in Central New York State). My PC was concerned about the BG, and A1C. I have an endocrinologist appt next week, will discuss that with him. I know that between not having healthy pancreas to produce insulin ( and liver mets) and side effect of the Lanreotide it will be hard to control it. But I would like to stay away from meds as long as I can :).
Thank you again for your post! I will also strive to be the " healthiest cancer patient"
Hugs! 🦓💜

Absolutely!

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?

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!

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?

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!