New pNET so scared

Thank you for sharing your experience. I hope mine is similar and can be observed for a bit. However I will be in the dark for these two month not knowing the grade or type, can wait or not. So I’m really anxious and wonder what I should do.
Did you see 6 surgeons through 2nd opinion?

I'm so sorry you have to go through this and understand your fear. The waiting is always the worst part.
Most nets are slow growing so there isn't always a sense if urgency from the medical field (though there always is in our brain)
Have you had a biopsy? The ki67 score will give you an idea of how aggressive it is.
When you say the ga68 was negative, did the known pnet light up?. If so, and nothing else lit up, I would consider that encouraging. Have you had a pelvic mri?

For some context for you, my husband was diagnosed with a 10 cm pnet on the tail of his pancreas and more than half his liver covered in tumors. 18 years later and many surgeries and treatments, he's still here and living life. As I said, this is typically a slow growing cancer. Our original net specialist discussed it in terms of a chronic disease and he was right. Its a lifelong game of whack-a-mole, but there is more options and hope now more than ever.
I pray for peace in your heart and an excellent outcome to your surgery.

@lindabees Do you mind sharing your husband’s treatment plan? My husband has an NET that they believe started in the jejunum that spread to his liver. He was diagnosed in Dec of 23 and began monthly injections in Jan of 24. Most recent scans (PET and CT scans) no signs of new tumors, but his chromagin A levels are higher than in the beginning so they are referring us to a nuclear medicine facility to hopefully be able to receive an IV infusion chemotherapy treatment.

@tgsenn70
Sure. But first, is your husband seeing a net specialist? Is the iv chemotherapy you refer to PRRT? If so, and just for clarification, thats not a chemo treatment. Its a nuclear medicine treatment where radioactive isotopes are injected which then bind to net tumors with sstr receptors which then treat the tumors.
As for my husband's treatments, he started with a distal pancreatectomy followed by y90 to both lobes of the liver. This killed the majority of the tumors in the liver and kept the rest stable, along with octreotide shots, for several years. He was then on afinitor for 3 years but only because of a growing lymph node, then had a break of all treatments for 4 years when the liver tumors finally started acting up again. He was on captem for 14 cycles and is now on a maintenance does of capcetibine only, which is keeping him stable.

@lindabees Thank you for sharing. He has an oncologist that is local (we live in Southern AL), but he is sending us to a specialty clinic that specializes in nuclear medicine via infusions. What is PRRT?

@tgsenn70
Just in case, here's a listing of net specialists in Alabama. Its always best to see a net specialist for this disease if at all possible. This is a rare cancer and requires a team with expertise in it. You can also search for other states if you need to.
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/?doctor=doctor&patient-group=patient-group&multidisciplinary-net-team-sites=multidisciplinary-net-team-sites&specialty=all&clin_state=Alabama&radius=5&zip=&practice_type=all#sortables
PRRT (Peptide Receptor Radionuclide Therapy) is an FDA-approved treatment for neuroendocrine tumors (NETs) that targets tumor cells by using a radioactive atom linked to a peptide that binds to somatostatin receptors on the tumors. The treatment involves administering the radiolabeled peptide intravenously, which then delivers radiation directly to the tumor cells, aiming to shrink tumors, relieve symptoms, and extend life. Common side effects include fatigue, nausea, and low blood counts, but rare but serious effects like kidney or liver damage are also possible