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NET - Insulinoma

Neuroendocrine Tumors (NETs) | Last Active: Nov 11, 2023 | Replies (210)

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@marilyn2525

As you may already know ( I did reply last week ) I had surgery at Mayo for the removal of my insulinoma tumor in the pancreas near the neck / head in 2018 Sept. If your reading this you may already know that first you must have the 72 hr fast to prove that you have it ( Dr at Mayo believed I had it right off. Then once proved they do a ESU and CT Scan to locate it. Mine was easily seen. Next step to remove...I understand that depending on your team, removal could be done through a less invasive procedure or full open enucleation type modified Whipple , or perhaps a full Whipple surgery. By the time ether surgeon told me where the tumor was located I finally cried , because over my life time and reading on line about insulinoma since the moment the Dr told me she believed I had it ( I ask her to write it down ). I went in the hall way at Mayo, sat down and looked on my phone to find it and was shocked to see that I had all but one of the symptoms for 20 years I was 65 then. Fast forward, 2 modified Whipples , two procedures and 13 total visits to Mayo. I feel the best I have in 21 years. I did recently go back ( during covid twice March 2020 and surgery for hernia July 2020 ). I feel that its so important that I get care from Mayo if its anything involving my abdomen or thyroid. I felt completely safe and protected at Mayo, during covid was no different. In March 2020 I flew from Florida in July we drove for the first time ( flight was cancelled ). We both did get covid months later, My husband had a meeting with two other physicians he works with the night before we left Michigan for our Florida place, my husband was sick for 20 days ...myself 4 or 5 with miner symptoms lingering. So I never got sick until Nov, 4th this year. My husband has lymphoma so he was hit harder. I will go back to Mayo for breast exams and thyroid checks because the town we live in only has one endocrinologist who said she was so busy with patients waiting one year to see her, I should go back to Mayo. My second surgery was to stop a leak, Mayo did do two procedures to stop the leak to no avail. It took over 20 years to have symptoms and never did one physician suggest anything was wronged. D6 yrs before I was diagnosed I had surgery at our local hospital, they kept me over night ( went in through ER ) I didn’t eat was in bed and by the time they wheeled me down to surgery. I nurse ask me how I was feeling...I said, very bitchy and upset and dI dont know why”. She checked my sugar and said it was 33. That was the first time I realized that if I didn’t eat I had low sugar. So for years whenever I felt like that, I knew I needed to eat and eat I did. I grew and grew to gain 60 lbs. I lost a significant amount of weight following surgery, then gained back about half, no it is coming off again gradually. I am heavier than I can remember and I don’t have to eat or I can wait to eat when others are ready, its wonderful.

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Replies to "As you may already know ( I did reply last week ) I had surgery at..."

Hello @marilyn2525, Thank you for this update. I hope this will help @preeti in some way about making a decision to visit Mayo. I'm glad that it has worked out so well for you and that you are feeling better. It sounds as if your life is no longer controlled by your blood sugar.