NET - Insulinoma

Posted by ahtaylor @ahtaylor, Jan 21, 2017

Hello to All,
I am joining this group from the Diabetes/Endocrine group. In July 2015 I was diagnosed with 2 insulinomas - both removed surgically at DUMC in NC. The diagnostic work-up included a 5 day hospital stay (72 hour fast + complications) and the surgery was an 11 day hospital stay (typical stay for a Whipple procedure). About 3 months post surgery, I started having recurrent hypoglycemia symptoms very similar to my pre-op symptoms. Insulinomas are very difficult to diagnose and locate and so far they have not been able to locate a new tumor but do suspect there is regrowth of an old tumor or growth of a new one. That is what will bring me to Mayo next week. Anyone been through insulinoma testing at Mayo? Hopeful to be starting down a path to possibly find a resolution of daily hypoglycemia symptoms but nervous because I have walked down this path once already. Glad to see the new group on NETs. Thanks.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

ahtaylor | @ahtaylor | Jan 26, 2017

In reply to @hopeful33250 "Hello @ahtaylor: It is always good to have a new member, welcome to the NET group!..." + (show)

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.

Teresa, Volunteer Mentor | @hopeful33250 | Jan 26, 2017

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

ahtaylor | @ahtaylor | Jan 22, 2017

Thanks @colleenyoung for the information. Thanks too for the question about why I stated I had walked down this path already. I have been through extensive testing and diagnosis of 2 insulinomas. I have also had surgery for the insulinomas, which involved 10 hour surgery, drains, full abdominal incision and an 11 day hospital stay. About 3 months after surgery, I started to have similar symptoms. I have had worsening hypoglycemia events over the last 1.5 years and now face a repeat of the series of testing as the thought is the tumor is recurring or there is a new tumor. My first round was not with the Mayo Clinic so I am new to the Mayo clinic but not new to the diagnosis. Thanks, again for your reply and information.

Colleen Young, Connect Director | @colleenyoung | Jan 22, 2017

Hi @ahtaylor and welcome to the NETs group. I'm glad you joined us here as well as the Diabetes/Endocrine group.
If you read this discussion thread -- Carcinoid http://mayocl.in/2j1tL0M --, you'll get to know pretty much everyone participating in the group. I'm specifically tagging @gaylejean on this conversation as she may be able to share a bit more about what you can expect at Mayo Clinic, although I don't know if she had insulinoma testing. I'm also bringing @ridgerunner in as she manages hypoglycemia.

AHTaylor, you mention "I have walked down this path once already." What did you mean by that?