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.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 24, 2017

@ahtaylor Thinking about you and I hope that your recovery is coming along well. Drop us a line when you feel up to it! Teresa

ahtaylor | @ahtaylor | Mar 16, 2017

In reply to @hopeful33250 "@ahtaylor Please know that we will be thinking about you tomorrow as you have your surgery...." + (show)

Thanks!

Colleen Young, Connect Director | @colleenyoung | Mar 16, 2017

In reply to @hopeful33250 "@ahtaylor Please know that we will be thinking about you tomorrow as you have your surgery...." + (show)

May the luck of the Irish be with you tomorrow for your surgery on St. Patrick's day, Allison (@ahtaylor). We'll be thinking of you.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 16, 2017

@ahtaylor Please know that we will be thinking about you tomorrow as you have your surgery. When you feel up to it, please let us know how you are feeling. Best wishes, Teresa
Copy to: @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @heidilynn4

ahtaylor | @ahtaylor | Mar 12, 2017

In reply to @hopeful33250 "@ahtaylor As I see from your previous post in February, you were planning on going back..." + (show)

Thanks!

gaylejean | @gaylejean | Mar 12, 2017

In reply to @hopeful33250 "@ahtaylor As I see from your previous post in February, you were planning on going back..." + (show)

Best of luck to you!

Teresa, Volunteer Mentor | @hopeful33250 | Mar 12, 2017

In reply to @hopeful33250 "@ahtaylor As I see from your previous post in February, you were planning on going back..." + (show)

@ahtaylor Thanks for the update, Allison. Keep us posted. Teresa

ahtaylor | @ahtaylor | Mar 12, 2017

In reply to @hopeful33250 "@ahtaylor As I see from your previous post in February, you were planning on going back..." + (show)

Thank you for the post. We have just arrived back in Rochester. I have testing for the first part of this week, surgery consult on Thursday and surgery is scheduled for Friday 3/17. Thanks for the thoughts and prayers.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 12, 2017

@ahtaylor As I see from your previous post in February, you were planning on going back to Mayo this week. Is that still the plan? Has your surgery been scheduled for this week? Please keep us posted. I will be praying for you to have good results. Teresa

ahtaylor | @ahtaylor | Feb 8, 2017

In reply to @ahtaylor "No doubt. They gave me D50 after my fast and it spiked and then dropped to..." + (show)

Thanks for asking! I am coming back to Mayo the week of 3/13. I will be having more testing that week to better localize the tumors and then surgery at the end of the week. Take care.

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