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Replies to "Hello @bmkelldog and welcome to the NETs support group on Mayo Connect. I can certainly understand..."
Neuroendocrine Tumors (NETs) | Last Active: Jul 2 5:42pm | Replies (215)
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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.
Replies to "Hello @bmkelldog and welcome to the NETs support group on Mayo Connect. I can certainly understand..."
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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!