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 | Oct 4, 2018

In reply to @nancymcegg "Do you know of a specific doctor I should make an appointment with at the Mayo..." + (show)

Hello @nancymcegg

No, I am not familiar with the NET specialists in Florida, but if you call Mayo's Florida appointment desk and explain that you need a second opinion for a possible insulinoma diagnosis, they will undoubtedly know who you should see. Here is their number for scheduling appointments at their Florida location:

Mayo Clinic in Florida
727-369-6849
8 a.m. to 5 p.m. Eastern time, Monday through Friday

Will you post again and let me know how you are doing with your second opinion?

nancymcegg | @nancymcegg | Oct 3, 2018

In reply to @hopeful33250 "Hello @nancymcegg and welcome to Mayo Connect. I am so sorry to hear of your possible..." + (show)

Do you know of a specific doctor I should make an appointment with at the Mayo in Florida?

Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2018

In reply to @nancymcegg "Hi! My local doctor's feel that I have an insulinoma but the endocrinologist at the Cleveland..." + (show)

Hello @nancymcegg and welcome to Mayo Connect.

I am so sorry to hear of your possible insulinoma diagnosis. I can certainly understand your concern, especially when two different doctors give you different answers. Is it possible for you to get a second opinion at Mayo. They do have a facility in Florida as well as Arizona and Minnesota.

Will you post again and let me know how you are doing?

Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2018

Hello @amya

Mayo has concierge services at each location. They should be able to help you find affordable accomodations, and answer your questions. Here is a link that will take you to their contact information. Please give them a call or email them. https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

Tom Wilson | @tomewilson | Oct 3, 2018

Here is a link you should find useful. Most either will take you the building you need to go to or there are busses. https://www.tripadvisor.com/SmartDeals-g43466-Rochester_Minnesota-Hotel-Deals.html

amya | @amya | Oct 3, 2018

I've been scheduled for testing at Mayo from 10/18 to 10/24 for insulinoma. Any suggestions from the group on places to stay that are relatively close that won't break the bank? Thanks!

Tom Wilson | @tomewilson | Oct 3, 2018

Uggg. I hope you can find answers. I can feel your frustration.

nancymcegg | @nancymcegg | Oct 2, 2018

Hi! My local doctor's feel that I have an insulinoma but the endocrinologist at the Cleveland Clinic in Florida thinks that I might be suffering from dumping syndrome. I had a Nissen fundoplication 5 years ago due to severe gerd but my hypoglycemia didn't start until 3 years later. I have had every scan you can think of and they can't find an insulinoma. I have been put on medication to keep food in my stomach longer but it hasn't helped. I had a gastric emptying study done and it was in the higher range of normal. I am so tired of feeling terrible all the time and I don't know what to do next.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 2, 2018

In reply to @gaylejean "I, too, have NET (Ileum), along with several METS. I have been going to Mayo since..." + (show)

Hello @gaylejean

You can of course have a private conversation by using PM (private message) but it is so helpful if you keep the conversation on the discussion page as we all learn from each other. I'm so glad that you are connecting and sharing with others!

gaylejean | @gaylejean | Oct 2, 2018

In reply to @tomewilson "I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has..." + (show)

I, too, have NET (Ileum), along with several METS. I have been going to Mayo since April, 2002, for labs, scans, MRIs, surgery, office visits. I just had bland embolization of one larger tumor on my liver. Sounds like we need to have a personal conversation.