NET - Insulinoma

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

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

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)?

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.

@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?

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.

Thank you soooo much! Great information!

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

thank you so much it’s very reassuring!

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