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ahtaylor (@ahtaylor)

NET - Insulinoma

Neuroendocrine Tumors (NETs) | Last Active: Apr 13 6:44am | Replies (169)

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Hello @ahtaylor: It is always good to have a new member, welcome to the NET group! I see that you have insulinoma. Is this a type of NET? Until you posted about it, I was not familiar with the term. All of us in the NET group can certainly relate to the fact that a rare tumor that is often misdiagnosed is very frustrating. Also, the Whipple procedure is often used for treatment of NETs. Please let us know how your Mayo visit goes. I’ve heard wonderful comments from everyone who has been to Mayo and I’m looking forward to hearing about your experience as well. If you would, please share what your original symptoms were with insulinoma. Have you always had the hypoglycemia symptoms or were there other symptoms as well? Best wishes to you as you seek answers. All of us in the new NET group look forward to getting to know you better! To all the members of NET @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes, let’s all welcome @ahtaylor to our group and support and encourage her! Teresa

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Replies to "Hello @ahtaylor: It is always good to have a new member, welcome to the NET group!..."

Thanks for the response. Yes, insulinomas are Neuroendocrine tumors. They produce insulin above normal levels and lead to hypoglycemia. The only symptoms they cause are hypoglycemia. I first noticed episodes back in 2014 and the episodes increased in frequency and severity until diagnosed and removed in 2015. The recurrence of symptoms started about 3 months after surgery. They are very difficult to locate. Mayo has been great. Very thorough and very efficient.  They have done multiple tests in a week trying to get the best answer and plan. Very impressive!  Thanks again for the response.

@ahtaylor Thanks for your very thorough explanation, Allison. Were the NETs found using the Octreoscan or Gallium 68 or perhaps through an endoscopy? This is very interesting, I thought I knew all about NETs but my knowledge base is increasing. Thanks for the great info. I’m glad to hear that you have been pleased with your Mayo experience. When do you expect to have the results of the tests? Please keep us posted. Teresa

@hopeful33250, they were found first through a 72 hour fast (which is one of the more common tests to identify that there is one) and then they were visualized by endoscopic ultrasound. They are typically very small and hard to locate and to even determine if they are present. My testing at Mayo this week is to determine if there  is another one. I have had  72 hour fast, mixed meal test, CT, lots of lab work and going soon for a Calcium Stimulation test. No answers yet but hopefully soon. Thanks for the questions.

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