I’m living with Pancreatic Neuroendocrine Cancer

I’m hoping to find a group where I can find out more information and be able to share issues that arise

@lovelea: I am sorry that you are in this situation, but I want to assure you this and other organizations you can access online under Carcinoid.org, LACNETS.org, etc have been a life-saver for me on this Neuroendocrine journey!
We share our experiences with medications, treatments, side-effects, and other issues that arise. We find acceptance of our disease and encourage positivity in our outlook daily.
You can reach me by “reply” and put @dbamos1945 on first line of text if you wish.
Best to you… Bette

Hi @lovelea, it is sad to hear of your situation as I completely understand. I was diagnosed with 5 pancreatic neuroendocrine tumors incidentally as well. I ended up getting a total pancreatectomy with all of the trimmings (spleen, gallbladder, duodenum, lymph nodes, etc.) about 6 years ago. I am still tumor free at this point and have routine imaging and tests to monitor. My tumors were a result of a MEN1 mutation and I also have had 3 1/2 parathyroids removed over the years.
I manage the resulting diabetes with an insulin pump/CGM and use Creon to aid in digestion.
My takeaway is that I was in shock at first those years ago, and figured I was done. But, I spent a lot of time reading and visiting different medical providers to find the best path for me. I am doing well now and manage to lead a normal life (for the most part.)

We are all here for you if you have any questions or need to talk. Take care and God Bless - Matt

I wish to join a group with NET Pancreas with multiple Secondaries in Liver, and on Octreotide for 5 years. Incidentally found out by the Radiologist while scanning for likely U Bladder stones. The tumor is 'Non-Secretory' as per the Biopsy reports.
First and 10th DOTA PET scans are almost the same