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Grade 1 Non-functioning (NF) NET
I have a well defined NF 1.7cm PNET in the body and a 6mm tumor (not biospied) in the tail of the pancreas. PET scan clear. Has anyone had a distal pancreatectomy with or without spleen removal and avoided metastasis after surgery? How big was your tumor before surgery? If you had metastasis, how long before it showed up? Where did it show up and what is your treatment? How are you doing?
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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!
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6 ReactionsPlease, reach out to me if you need more information. In my opinion the sooner you have the surgery the better!
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1 ReactionHello @ 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!!🦓💜
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1 ReactionWe have planned surgery for October 2024 robotic, really needed summer and fall to prepare.
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3 ReactionsHi @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?