NET - Insulinoma

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!

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.

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,
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!

Thanks, Teresa. . . I wish I could be more helpful with this one. While I have lots of experience with hypoglycemia, I don’t have experience with Losartan or Cap/Tem treatments. I would recommend communicating the concerns with your physician and see what evaluation is warranted. Best wishes!

Hello @bnjcrew,

Your post has been moved this discussion group where other NET patients are discussing blood sugar problems. I would like to invite @ahtaylor to post with you as well.

Have you discussed this change in blood sugars with your doctor? I'd be interested to hear if the doctor thinks that change in blood sugar might be related to taking the Losartan.

My husband started Losartan last week after being off all BP meds since diagnosis in 2022. From day one we have noticed significantly lower morning blood sugars(70’s vs 100) has anyone else seen this? He is currently on cap/tem treatment 5th round.

Hello dhtaylor!
My HPB surgeon warned me that the medication used for NET care ( Somatulin/Lanreotide) causes damage to gall bladder. So I have my gallbladder removed during debulking surgery (distal pancreatectomy, spleenectomy and some liver mets removed).

My husband is on 28 day octreotide shots in addition to the cap/tem. No hypoglycemic episodes since starting the cap/tem. Wishing you the best.

Always keeping the fight! Glad to hear you have a great experience at Dana Farber. Being comfortable and confident in your care team is certainly an important part of the battle. Both my oncologist and endocrinologist have told me MRI is a better imaging specifically for the liver (vs. CT). Good to hear the outlook is getting more positive. 9 years since my original diagnosis and 6 months since the liver mets for me - still doing very well, hypoglycemia is reasonably controlled with medication and feeling good 🙂
On 2nd round of Sandostatin (LAR) since the beginning of the year. Severe allergic reaction on the first round and had to do an allergy desensitization so I could take it again - as it was the medication that worked the best at controlling the hypoglycemia. Recently have found gallbladder distention and common bile duct dilation on a CT and MRI that is attributed to the Sandostatin. Not having significant or consistent symptoms though - so just monitoring liver enzymes and for symptoms for now.

Does anyone else on Sandostatin long term have experience with gallbladder issues? I know it is one of the risks with Sandostatin . . . . Just curious what others had experienced.

Best wishes in your journey!