NET - Insulinoma

Hello,
I have hypoglycemia and blood chemistry that is indicative of an insulinoma. My most recent blood work showed a fasting glucose of 52 mg/dL, C-Peptide of 2.6 ng/mL, Proinsulin of 112.3 pmol/L, and insulin of 11 ulU/mL. I have fairly frequent bouts of hypoglycemia and my glucose levels sometimes drop into the upper 30's (I have a CGM). I am seeing an Endocrinologist, but she doesn't have any experience treating insulinoma's. I did have a CT scan, but it did not indicate a tumor. The endocrinologist is suggesting I find a surgeon and have them try to locate the tumor during surgery. This makes me a bit nervous. I would rather have the tumor located prior to going into surgery. Should I request endoscopic ultrasound to try to locate it? I have also read about calcium stimulation test that is apparently very successful at finding the tumor.
Thanks!

Have an insulinoma (diagnosed 12/23) and have had many types of treatment including pancreatic surgery in 4/25. It had already spread to the liver so is not really curable. Taking cabometyx now which has some effects, dizziness and changes to how food tastes among others.
Mine was found very quickly by CT scan and confirmed by liver biopsy.

Hello @bmkelldog and welcome to the NETs support group on Mayo Connect. I can certainly understand your hesitancy to undergo surgery before understanding where a tumor might be located. I would strongly recommend that you see a NET specialist. A second opinion with a NET specialist might be helpful at this time. If you would like to seek help from the Mayo Clinic, contact one of the appointment offices using this link, http://mayocl.in/1mtmR63. Mayo has three locations in Minnesota, Florida, and Arizona.

I would also like to invite @ahtaylor to post with you regarding her experiences with Insulimona. She has had the calcium stimulation test as well as surgeries.

Hello @bmkelldog! I completely understand your frustration! Diagnosing and then locating insulinomas, due to their small size is quite the challenging journey. In my experience imaging does not always reveal the location of insulinomas. The calcium stimulation test is a great test for locating the region of the pancreas/liver and then imaging is more useful in locating the tumors. Once the tumors are located, either general or specific location, then surgical and/or treatment options can be discussed. Collectively, I have had 2 surgeries (modified whipple and distal pancreatectomy and splenectomy), multiple calcium stimulation tests and a hepatic artery embolization. 11 tumors have been removed or ablated. I still have tiny tumors in the liver and pancreas that are not able to be visualized by imaging. I have had great care and follow up with the endocrinologist at Mayo. I am happy to answer any other questions you may have. Best wishes!

Thank you ahtaylor! Very informative regarding insulinoma’s. I didn’t know any of this since mine are regular NET’s that sometimes secrete pancreatic polypeptide. So glad you are doing well! Best wishes