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.

@gaylejean

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.

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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!

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

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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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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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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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@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.

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

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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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@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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@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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@hopeful33250

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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Mayo was able to confirm diagnosis of insulinoma and find it with endoscopic ultrasound. Everyone was wonderful. Kind, compassionate and knowledgeable. I am scheduled for surgical removal on 11/27. I am confident in the care I will receive. My worries now are centered around insurance coverage. Working with them to try to get the needed documentation. Sounds like they will approve the insulinoma removal at reasonable and customary. I will need to cover costs above this. I was advised to have my gall bladder removed. I may have to do this in a separate surgery at home.

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@amya

Mayo was able to confirm diagnosis of insulinoma and find it with endoscopic ultrasound. Everyone was wonderful. Kind, compassionate and knowledgeable. I am scheduled for surgical removal on 11/27. I am confident in the care I will receive. My worries now are centered around insurance coverage. Working with them to try to get the needed documentation. Sounds like they will approve the insulinoma removal at reasonable and customary. I will need to cover costs above this. I was advised to have my gall bladder removed. I may have to do this in a separate surgery at home.

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I am so glad to hear that you have a confirmed diagnosis and a treatment plan in place, @amya. That is a relief, isn't it? I will certainly pray and send good thoughts your way on 11/27.

While I have not been diagnosed with insulinoma I have had 3 surgeries for NETs in the duodenal bulb and the 2nd surgery included the removal of the gallbladder. That procedure seems to be common with NETs patients, but I'm not sure of the reason for that.

Do you know how long you will be hospitalized after surgery?

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@hopeful33250

I am so glad to hear that you have a confirmed diagnosis and a treatment plan in place, @amya. That is a relief, isn't it? I will certainly pray and send good thoughts your way on 11/27.

While I have not been diagnosed with insulinoma I have had 3 surgeries for NETs in the duodenal bulb and the 2nd surgery included the removal of the gallbladder. That procedure seems to be common with NETs patients, but I'm not sure of the reason for that.

Do you know how long you will be hospitalized after surgery?

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It is a relief. I'm a bit hung up the logistics of the financials, but the tumor must come out. I'll deal the the financials as I have to. I'll be in the hospital for about 5 nights they predict. Will depend if they can do it laproscopic or have to convert to open. I hope you are feeling well.

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@amya

It is a relief. I'm a bit hung up the logistics of the financials, but the tumor must come out. I'll deal the the financials as I have to. I'll be in the hospital for about 5 nights they predict. Will depend if they can do it laproscopic or have to convert to open. I hope you are feeling well.

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This all sounds good, @amya. I'm sure you will be relieved to have this over. The laparoscopic sounds interesting. I wasn't aware that type of surgery could be done that way.

By the way, was the Gallium 68 Pet scan used to diagnose your insulinoma?

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