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Neuroendocrine Insulinoma: Is treatment different for this type?
Neuroendocrine Tumors (NETs) | Last Active: Mar 25, 2023 | Replies (12)Comment receiving replies
I would like to invite @ahtaylor to this discussion as she has also had a lot of problems with blood sugar related to NET insulinoma.
Are you currently seeing a NET specialist? Mayo Clinic has great NET specialists in all three of their locations (MN, AZ and FL). If you are interested in getting a second opinion, here is the link where you can check on appointment availability, http://mayocl.in/1mtmR63.
If you are not able to be seen at Mayo (for any reason), here is a list of other specialists worldwide,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
I look forward to hearing from you again. Will you post again and let me know how you are doing?
Replies to "@pontiac, I would like to invite @ahtaylor to this discussion as she has also had a..."
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@pontiac - thanks for your post! I completely understand your frustrations! After my Whipple procedure in 2015, my hypoglycemia continued which is how I became a patient at Mayo. Once at Mayo and after a week of testing and intraoperative ultrasound, 9 additional tumors were discovered. Post the distal pancreatectomy @ Mayo in 2017, I continue to have hypoglycemia, only to eventually learn there are additional tumors in my pancreas and possibly liver. My care and care providers at Mayo are fantastic! While the process of fighting the hypoglycemia is quite frustrating, I know I am in the best hands at Mayo. I go to Rochester, on average, every 6 months since my surgery there is 2017. I also wear a CGM which I find very helpful in management of blood sugars. I am currently on Octreotide to manage the hypoglycemia. Please don't hesitate to ask questions and I will try to help in any way possible. Best wishes!