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.

Thank you so much @hopeful33250 ! Yes, I will post an update after the appointment today.

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@marilyn2525 Thank you for sharing your experience dealing with Insulinoma! You have been super helpful.

I did read all your posts and know that you also had tumor on the head of pancreas. Was it on the surface? Considering you had to stay for 9 days post op, I am wondering what’s going to be in my case. I left my kids at my sisters place and constantly thinking how I am going to plan everything with both me and my husband are here at Mayo. I am really hoping and praying that they can remove the tumor with less invasive laparoscopic surgery.

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Good morning!
Good to hear from you! I am so glad for you they were able to locate the tumor. I know what a relief that is :)!
Dr. McKenzie is wonderful. He was my surgeon as well. He explains things very well and has a great bedside manner. The list of questions you mentioned are certainly good to ask. Other questions I can think of - will you have drain(s) post op? pain control options (I had an epidural but I also had my spleen and part of my pancreas removed)? Can the procedure be done laproscopically or is it open? With COVID - visitor restrictions?
As for the location of my tumor - I had 9 tumors removed and not all of them were on the surface. I also had a distal pancreatectomy.
So glad you have had a great experience so far. Dr. Vella and Dr. MacKenzie are both great physicians! I will return in April to see both of them as I continue to have hypoglycemia and at least one tumor that is hiding from view. Take care and best wishes. Please let me know if you have additional questions.

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@preeti

@marilyn2525 Thank you for sharing your experience dealing with Insulinoma! You have been super helpful.

I did read all your posts and know that you also had tumor on the head of pancreas. Was it on the surface? Considering you had to stay for 9 days post op, I am wondering what’s going to be in my case. I left my kids at my sisters place and constantly thinking how I am going to plan everything with both me and my husband are here at Mayo. I am really hoping and praying that they can remove the tumor with less invasive laparoscopic surgery.

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When I had my tumor removed, there was no talk about any other surgery than open. My tumor was at the head near the pancreatic duct. They removed and checked the margins to make sure they had it all. I think on second day of post surgery I sat up in bed, then slow walking the hallways.
I wish you all the best, just think about how great it’s going to be with the tumor out. I never realized how bad my life was with it because I learned to live with it. It’s really so nice. Some day soon this becomes a distant memory. Truly

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@peeti. I had an insulinoma removed from pancreatic tail in Nov 2018. Dr. McKenzie and Dr. Thompson also took my spleen and part of my stomach. It was done laparoscopically. I was at St. Mary’s for 2 nights. Unfortunately developed a pancreatic leak and then DVT and PEs, so after 3 hospitalization had a total of 12 nights at St. Mary’s. Life without the tumor has been so much better. I’m happy they found your tumor. Get it out and move forward.

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Hello everyone! Thank you so much for all your replies and suggestions. I’m scheduled for surgery on Friday. I’ll be admitted the night before. Both the doctors answered all my questions which helped me to opt for surgery so quickly. I appreciate all the support from all of you! Mayo is the best! So organized and everyone here is so empathetic! Will post an update after my surgery. Again, thank you all!

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@preeti

Hello everyone! Thank you so much for all your replies and suggestions. I’m scheduled for surgery on Friday. I’ll be admitted the night before. Both the doctors answered all my questions which helped me to opt for surgery so quickly. I appreciate all the support from all of you! Mayo is the best! So organized and everyone here is so empathetic! Will post an update after my surgery. Again, thank you all!

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Best of luck with your surgery. You are in good hands,

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@preeti

Hello everyone! Thank you so much for all your replies and suggestions. I’m scheduled for surgery on Friday. I’ll be admitted the night before. Both the doctors answered all my questions which helped me to opt for surgery so quickly. I appreciate all the support from all of you! Mayo is the best! So organized and everyone here is so empathetic! Will post an update after my surgery. Again, thank you all!

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Best wishes with your surgery and recovery!

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@preeti

Hello everyone! Thank you so much for all your replies and suggestions. I’m scheduled for surgery on Friday. I’ll be admitted the night before. Both the doctors answered all my questions which helped me to opt for surgery so quickly. I appreciate all the support from all of you! Mayo is the best! So organized and everyone here is so empathetic! Will post an update after my surgery. Again, thank you all!

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@preeti

How wonderful that you have such confidence in your medical team. You will be in my thoughts (and prayers) on Friday. Rest well until then. So, you will be admitted to the hospital tomorrow evening?

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@ahtaylor

A 72 hour fast, fortunately does not always last 72 hours. You start fasting and fast up until blood sugars to drop to less than 50. Once they do, they draw labs and can use that information to determine if an insulinoma is likely. The test can last up to 72 hours and is stopped at that point if sugar does not drop. Sugars are checked hourly. A mixed meal test starts with fasting labs and then you eat and take sugars and other labs every 30 min. Thanks.

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I had the 72 hr fast at Mayo, Rochester. I dropped to 53 then the fast was over. I believe the stop number is 54...it was in 2018.

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