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) group.

@amandajro

@kapple what type of information would you find most helpful about Mayo Clinic ahead of your July 6th appointment so members can help point you in the right direction on Connect for resources and/or share their experience?

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I would like to know if anyone has had success in treating insulinoma at the Phoenix Mayo clinic where I will be going for my appointment? The endocrinology department said their doctors treat all areas however insulinoma is so rare I worried I’ll just be wasting my time and have to Continue the search for someone who can treat it

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My experience has only been at the Rochester, MN Mayo Clinic. The Endocrinologist I have there is well versed in insulinomas and has done much research in the field. I wish I could help with the question about Phoenix Mayo Clinic. I can support the fact that insulinomas are rare. Also, if surgery is required, having a surgeon that is familiar or that specializes in endocrine/insulinomas is very helpful as it is not a simple surgery. I wish you the best in your journey and wish I had more helpful information. Take care.

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@kapple

I would like to know if anyone has had success in treating insulinoma at the Phoenix Mayo clinic where I will be going for my appointment? The endocrinology department said their doctors treat all areas however insulinoma is so rare I worried I’ll just be wasting my time and have to Continue the search for someone who can treat it

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Kapple, the benefit of Mayo Clinic is that physician teams work together across all Mayo Clinic locations. No matter which location you choose, you have access to expertise in treating insulinoma of multiple physicians. As @ahtaylor points out, her endocrinologist at Mayo Rochester is a leader in insulinomas. I encourage you to call Mayo AZ and Rochester to ask about insulinomas to help inform your decision. Here's the contact information for all 3 campuses: http://mayocl.in/1mtmR63

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thank you so much it’s very reassuring!

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@skhollandmt

ahtaylor………could you tell me what hotels you find are the easiest for getting to the clinic via subway or skywalk?
Thanks
Steph

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HI Steph,
Have you had time to reach out to Concierge Services yet? Most of the hotels in the area provide transportation to and from the Clinic. It's convenient because you get dropped off at the main entrance you can catch the shuttle back later when your appointments are over. We have several good hotels that opened just over a month ago that are offering so great rates.
https://www.hyatthouse.com
https://www.ihg.com/staybridge/hotels/us/en/rochester

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@colleenyoung

Hi Steph, Do you know about the free Concierge Services at Mayo Clinic?

You can get your travel and accommodation questions answered by someone at the free Concierge Services at Mayo Clinic. The staff at the concierge desk can help with hotel/lodging recommendations, according to your wishes of proximity, price and space requirements. Here is how you can contact them:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu

Let me connect you with @lmindela

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Thank you soooo much! Great information!

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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

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

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