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NET - Insulinoma
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.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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I feel a bit stronger. Do not be afraid of any of it. I welcomed the NG tube which helped me so much. I haven't taken anything stronger than tylenol, because I don't want to get constipated. I didn't eat a thing for over one week. I'm at my office today. Amazing journey !
still can't get over the moment when the wonderful Dr. told me, " we think you have an insulinoma "
Thank God for Mayo Clinic....I would have died with my tumor and no one would ever known.
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1 ReactionI just got a call from my endocrinologist, she is referring me to Mayo. Thanks so much everyone for your feedback. Any specialists you really liked that you would recommend I see? Thanks.
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1 Reactionanyone in the department of Endocrinology will take excellent care of you. my surgeon was Dr. Benzon Dy
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2 ReactionsI, too, have NET (Ileum), along with several METS. I have been going to Mayo since April, 2002, for labs, scans, MRIs, surgery, office visits. I just had bland embolization of one larger tumor on my liver. Sounds like we need to have a personal conversation.
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1 ReactionHello @gaylejean
You can of course have a private conversation by using PM (private message) but it is so helpful if you keep the conversation on the discussion page as we all learn from each other. I'm so glad that you are connecting and sharing with others!
Hi! My local doctor's feel that I have an insulinoma but the endocrinologist at the Cleveland Clinic in Florida thinks that I might be suffering from dumping syndrome. I had a Nissen fundoplication 5 years ago due to severe gerd but my hypoglycemia didn't start until 3 years later. I have had every scan you can think of and they can't find an insulinoma. I have been put on medication to keep food in my stomach longer but it hasn't helped. I had a gastric emptying study done and it was in the higher range of normal. I am so tired of feeling terrible all the time and I don't know what to do next.
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1 ReactionUggg. I hope you can find answers. I can feel your frustration.
I've been scheduled for testing at Mayo from 10/18 to 10/24 for insulinoma. Any suggestions from the group on places to stay that are relatively close that won't break the bank? Thanks!
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1 ReactionHere is a link you should find useful. Most either will take you the building you need to go to or there are busses. https://www.tripadvisor.com/SmartDeals-g43466-Rochester_Minnesota-Hotel-Deals.html
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2 ReactionsHello @amya
Mayo has concierge services at each location. They should be able to help you find affordable accomodations, and answer your questions. Here is a link that will take you to their contact information. Please give them a call or email them. https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services