1. < Neuroendocrine Tumors (NETs)

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 7, 2021
In reply to @marilyn2525 "Hi, I went to Mayo in Sept. of 2018, for a thyroid nodule. While I was..." + (show)
@marilyn2525

Hi, I went to Mayo in Sept. of 2018, for a thyroid nodule. While I was there I told the internist I was having such weight gain because I had to eat or I thought I would pass out. Thank God, he sent me to a specialist in metabolism, she is an Endocrinologist. She listen to my story without judgement and ask all the right questions. She gave me a card for lab work if I started to feel one of my episodes ( thats what I named them ) now remember I have now been fasting for a thyroid biopsy ( our local hospital back home did one and had too much blood in the one they did so they wanted me to see a surgeon ) while I was on the table to get the biopsy one of the nurses told me that when I was done to go back to E 18 …I was a bit confused as I was fasting now for about 18 hours ( hard to do with an insulinoma ) when I walked back into her office …the first thing she ask me was how I felt. She ask me to sit down, then she told me that after our earlier conversation she called a fellow and discussed with him what she thought…he agreed with her that it sounded like insulinoma. But now I needed to either stay at Mayo or come back for the 72 hour test. I told he r I would come back in a couple weeks. When I went back the 72 hour test was to start in the Mayo Clinic through the lab in the endocrinology department….Blood drawn every hour, until noon then I would move to become an in patient at St. Mary’s. I was done just before noon , an never made it to the hospital. From there CT Scan & ESU were done, the tumor unfortunately was at the head about the size of a grape. It was full open surgery, 10 day stay, and some issues post op. All in all I feel I was well taken care of. I never heard the work insulinoma and really wasn’t sure where my pancreas was. I looked it up and knew from alll my symptoms that she was onto something. To me it was all a blessing, a gift from God.

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@marilyn2525

I am glad that you posted about your diagnosis of Insulinoma and experience at Mayo. It sounds like your diagnosis and treatment went very well. I'm glad that you reported about this as it is an encouragement to others.

How are you feeling now? Do you have regular follow-ups?

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marilyn2525 | @marilyn2525 | Aug 8, 2021
In reply to @hopeful33250 "@marilyn2525 I am glad that you posted about your diagnosis of Insulinoma and experience at Mayo...." + (show)
@hopeful33250

@marilyn2525

I am glad that you posted about your diagnosis of Insulinoma and experience at Mayo. It sounds like your diagnosis and treatment went very well. I'm glad that you reported about this as it is an encouragement to others.

How are you feeling now? Do you have regular follow-ups?

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Yes, I do have regular visits to Mayo Rochester & will have some test done at Mayo Jacksonville in six months. Nothing about open surgery is simple, but having Mayo surgeons do this type of surgery was a great comfort to me. Because the nature of insulinoma, and the fact it is uncommon makes getting a diagnosis as rare as the tumor itself.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 8, 2021
In reply to @marilyn2525 "Yes, I do have regular visits to Mayo Rochester & will have some test done at..." + (show)
@marilyn2525

Yes, I do have regular visits to Mayo Rochester & will have some test done at Mayo Jacksonville in six months. Nothing about open surgery is simple, but having Mayo surgeons do this type of surgery was a great comfort to me. Because the nature of insulinoma, and the fact it is uncommon makes getting a diagnosis as rare as the tumor itself.

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Oh, I do agree, @marilyn2525. I'm so glad that you are following up with Mayo Clinic. Insulinoma is rare and you do need the kind of expert care that Mayo provides.

Do you mind sharing the name of your Mayo doctor (or perhaps you have a team of doctors)?

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marilyn2525 | @marilyn2525 | Aug 8, 2021

The amazing woman who diagnosed my insulinoma just from conversation ( test to prove later ) Dr. Ekta Kapoor without her I doubt I would now be alive. The first surgeon who did the removal of the tumor Dr. Benzon M. Dy, my second surgery to stop the pancreatic leak was an amazing pancreatic surgeon Dr Sean P. Cleary. My surgeries were 9 weeks apart. They were open modified whipples ( not sure what modified whipple means ) . I do know what a whipple surgery is. I have since found out that the pancreas is the most unforgiving organ we have. Its a brutal surgery, but if I can do it twice at 65 yrs old…I would suggest if you need it, do not be afraid. I feel better than I have in twenty years. The correction of insulinoma was within two days of that first removal surgery, my sugar levels became normal right away. Amen

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hoochinmama | @hoochinmama | Apr 12, 2022

I need Info On Isulinomas? not sure where else to turn

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ahtaylor | @ahtaylor | Apr 13, 2022

Good morning and welcome to the group! What information are you looking for on insulinomas? I am happy to help in any way I can. I was first diagnosed with insulinomas in 2015 when I had 2 removed through a modified Whipple procedure in NC. I continued to be hypoglycemic and was referred to a great physician at Mayo Clinic. Through a series of tests/procedures, Mayo discovered and removed or ablated 9 additional tumors in 2017. I continue to have hypoglycemia and through testing know there are 1 or 2 more tiny tumors and surgery is not an option at this time. I had a procedure back in March of this year to control the hypoglycemia. Please share any questions and best wishes in your journey. Mayo is a great place to be a patient with insulinomas!

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jadedprincess | @jadedprincess | May 26, 2022

Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad to answer any questions someone may have about it. My blood sugar is stable. I do have have some digestive issues with certain foods and I have high platelets due to not having a spleen. But I feel great.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 27, 2022
In reply to @jadedprincess "Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad..." + (show)
@jadedprincess

Hello all, I've had the distal pancreatectomy with splenectomy five years ago. I would be glad to answer any questions someone may have about it. My blood sugar is stable. I do have have some digestive issues with certain foods and I have high platelets due to not having a spleen. But I feel great.

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Hi @jadedprincess,

You mentioned having "high platelets" due to not having a spleen. Does this cause any particular symptoms?

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jadedprincess | @jadedprincess | May 31, 2022

I do not have any symptoms, but I have had a couple of small blood clots. They present as a very painful, red, hot bump. I work in healthcare so I know to go in right away to be seen and treated. And of course, my labs usually scare the pudding out of any new doctor until I give them my history. 🙂

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 29, 2022
In reply to @hoochinmama "I need Info On Isulinomas? not sure where else to turn" + (show)
@hoochinmama

I need Info On Isulinomas? not sure where else to turn

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Hello @hoochinmama

I see that you posted a while ago. Do you have a diagnosis or Insulinoma? What would you like to know?

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