Grade 1 Non-functioning (NF) NET

Hi @beaglebass, you’re asking great questions. I’m tagging a few members like @tinerobison @donnarushing55 @vtn @lizzyeastwood @c2pricorn66 @bluedane who have experience with non-functioning pancreatic NET and can share their treatment journey with you.

You may also appreciate this related discussion:
- What's recovery after distal pancreatectomy and splenectomy like?
https://connect.mayoclinic.org/discussion/recovery-after-distal-pancreatectomy-and-splenectomy/
Beaglebass, do you have surgery scheduled?

We have planned surgery for October 2024 robotic, really needed summer and fall to prepare.

Hello @ beaglebass! My pNET is functioning, so my story may not be too close to yours. But - here it is: my tumour was discovered incidentally during a post-stroke work up in November 2022. After F18-DG and Ga68 Dotatate PET scans I went for open surgery (with total hysterectomy due to endometrial cancer) on February 1, 2023. My tumour was very big 16×20 cm (1.8 kg). So I had distal pancreatectomy, with spleen and gall bladder removal, and partial stomach resection. Unfortunately for me my NET had already spread to my liver ( hence Grade 2, Stage4). I have been on Lanreotide/Somatuline injections every 4 weeks since. I have CT scans every 3 months to follow the progression and the effect of the tratment.
I was 62 yo at the time of surgery and am now on disability. With less invasive surgery (robotic) I believe recovery is much faster. I did not have that option due to complicated surgery for both cancers.
Good luck! You will be OK!!🦓💜

Please, reach out to me if you need more information. In my opinion the sooner you have the surgery the better!

If you are considered a candidate for surgery, my advice would be sooner than later. My pNET is in the tail, non functioning and smaller than yours but has metastasized to my liver (many extremely small but there, just the same). I cannot get a definitive answer but I believe the liver involvement along with my age (68) is the reason I am not considered a candidate for surgery. Since my only real symptom is back pain, this is extremely frustrating and disheartening. Take advantage of the fact you have caught it before no metastatic involvement. I know it’s not an easy surgery but a good team can navigate you through it. Best of luck!

BTW, I’m in the Cam2029 Clinical Trial at Mayo/Jacksonville and tolerating biweekly octreotide injections very well so there is much to be thankful for. Neuroendocrine tumors truly are the elusive zebra!

Thanks for sharing. I will seek surgery ASAP after 2nd opinion from academic medical center. Just worried about quality of life postoperative.

Hi. In December 2019 I had a biopsy that showed I had a 2cm non-functioning malignant Pnet ki >2.
I had a distal pancreatectomy performed at Mayo Rochester in January of 2020. No spleen removal. I have scans every 6 months. So far, no metastasis. A small nodule in my lung showed up on scan last May, The scan report says lung nodule looked suspicious. We are on wait and see with the lung nodule. Presently, I have no symptoms and I am feeling well. I have a few ventral hernias near incision, so I’m careful to not lift anything too heavy. Initially, after my first biopsy, I was really frightened. After four years, I still get a little frightened something might return, but for the most part I live a completely normal life.

Lizzy, thank you for sharing. Best of health. Planning surgery ASAP , we worry about recurrence. Is your diet normal or modified daily? Seeking doctor to spare spleen but so far recommended spleen removal. Once you have your scan plz. let me know how you are doing! Thanks Ken

Hi Ken, Glad you’re being so proactive! Reoccurrence is a frightening thought, these message boards really help. I haven’t changed my diet at all. I haven’t found anything too spicy or sweet that causes problems, but listen to whatever your drs say. My scan is next week. I’ll let you know how it goes. Please keep me updated on your surgery. Best of luck and health!