Pancreatic NF-NET stable since 2005 - surgery or not?

Posted by benr @benr, Mar 18, 2019

Hello the NET community, I am a 63 yr old male with generally good health and BMI. About a year and half ago I had a CT scan for another reason but the radiologist discovered a 2cm mass in my pancreas that looked like a pNET. After further imaging studies such as Ga-68, MRI (with Eovist contrast), endoscopic US (without FNA) the diagnosis was confirmed. It is a non-functional NET in the body of the pancreas and I have no related symptoms and no visible metastasis. I went back to 2005 and retrieved some old CT scans and sure enough it was there back then and was maybe 3-4 mm smaller. I have also monitored it in the past year and a half and it’s still stable. Also, blood markers did not show anything specific or of concern. I have seen 5 GI surgeons and 4 of them strongly recommend taking it out using distal pancreatactomy. They would remove about half of the pancreas and there is a small chance that I would develop diabetes and possibly needing digestive enzymes. The last surgeon along with a couple of GI medical ecologists are comfortable with monitoring it every 6 months and so far I have agreed with them. I am wondering if anyone in the NET community has had a similar condition and what their thoughts would be.about surgery or not. Thanks much.
Ben

Hello Ben, (@benr) and welcome to Mayo Connect.

I'm so glad that you posted about your p-NET. It sounds as if your doctor has very diligently examined this situation doing the endoscopic US, Ga-68, MRI, and follow-ups. You mention your blood markers being good, does this include your Seratonin levels, Chromogranin A , etc.? Have you done the 24-hour Urine 5HIAA collection as well? I take it that you do not have any symptoms of carcinoid syndrome like diarrhea, episodes of flushing, etc.? If so, that is a good sign. Here is a listing of follow up tests that should be done, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/.

Is your current doctor a NET specialist? Here is a listing of doctors throughout the world who specialize in NETs, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If your doctor is not on this list, it might be good to consult with one even if it involves some traveling. After a consultation, the specialist can then follow-up with your local doctor.

Another Member, @markbrinkley, recently posted about his NET and was advised similarly. He saw Dr. Thor at Mayo Clinic in Minnesota. I hope that he will join this discussion and share information. If you would like to read what he has said about his journey with NETs just click on @markbrinkley and that will take you to all of his posts.

I look forward to hearing from you again. Will you post again as you have any questions or concerns?

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