PanNET and CgA results

It sounds like a slow growing tumor especially grade 1 low ki-67 wait and watch is pretty standard. Why did you have whipple surgery? Do you have a net specialist?

@petie1: why not ask for repeat scan in 3 months? It would give you and your NET oncologist more info to determine treatment schedule.
And/Or… ask your oncologist for NET oncology surgical consultation to review scans for surgical opinion.
There is much controversy regarding CgA numbers being a reliable marker for treatment because many situations alter their test results.
I hope you trust your gut and are persistent in your best results.
Best health to you..,

Thanks for your reply and time!
I had chronic pancreatitis which cause a mass of "abnormal cell growth".
I have not seen a net specialist yet. This is now offered to me since I have many questions.
Your all witnessing my initial panic.
I've read many good stories here with favorable outcomes. I appreciate all you put forward.

Follow up with pnet specialist inquire about pet scan specific to neuroendocrine tumors. Where are you located? Hopefully near a place that can treat you with the best care! Good luck!

Thank you! Ivwish you well.
My first MD team leaves me with many unanswered questions.
I have a surgical consult next week. I have my GP next week and he will help with testing and monitoring.
I'm waiting for a call back from oncology to see if the can see me this year! Awesome on that one. My endo can see .e in September... oh and this year!
Frustrating.

@petie1: So sorry you aren’t getting the care you NEED NOW. It may be because of the medical insurance coverage you have chosen. We NET patients need expensive tests, not to mention the charge of treatments and medication. Do what you can to improve your coverage even if you have to adjust your budget to pay the premiums. Your medical care should be primary. If you can sign up for Original Medicare as your Primary insurance and obtain a senior suppliment to cover medications and the 20% do so, I think this is your best coverage given your NET diagnosis.
If you are younger, research your options, but remember when you sign up for S/S to get A&B plus Original Medicare (not Medicare Advantage). I am in your corner hoping for your best outcome!!! 🙂

PLEASE have them refer you to a NET surgical oncologist so a tumor board can review your case. These surgeons are specialists, have likely seen/treated all different kinds of NETs & IMO are very proactive in staying on top of your case. Good luck to you!

Thank you all!
I've since had an in person oncology / surgical consult, and it was very informative. I'm happy with this team keeping me up on testing.
I've learned that there may be less benefit to me in removal of the NET from what remains of my pancreas, post whipple. There a good chance the entire remaining pancreas would be removed with the tumor. This is with considering its current small size. Better to treat this and monitor additional growths and potentially remove those.
I'll work with this, since its as good as it gets. I'm thankful with where I'm at, since I see what pancreatic cancer really does to people we care about. I'm better off than most. I'll pray for everyone.