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.

@hopeful33250

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?

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Hello @nancymcegg

I was just thinking about your last post or Oct. 3 and I hope you are feeling better. I was also wondering if you have any answers regarding the possible insulinoma diagnosis.
Have you gotten another opinion at Mayo or another facility yet?

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@amya

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!

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Hi @amya

I was noticing that in your post last month you mentioned a Mayo appointment Oct. 18 to the 24th for testing about insulinoma. I hope that appointment went well and you received some answers.

If you are comfortable doing so, will you update me on how you are doing?

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@nancymcegg

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

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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?

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@hopeful33250

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?

Jump to this post

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

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@nancymcegg

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.

Jump to this post

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?

REPLY

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

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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

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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!

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

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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.

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