NET - Insulinoma

Hello @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!

I, 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.

anyone in the department of Endocrinology will take excellent care of you. my surgeon was Dr. Benzon Dy

I 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.

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.

@marilyn2525
What a great report! If you don't mind sharing more, what were the symptoms you had been experiencing?

I just left Mayo, Rochester on Monday. My insulinoma was removed and so far so good. I feel so blessed that after a life of " not knowing " what was wrong..a Mayo Doctor listened to me discribe my symptoms and within a few hours called me back to her office and said the word I never heard of " insulinoma" I went back a couple weeks later to have the 72 fast and by noon the first day it was confirmed. I went back a couple weeks later and had cat scan and Endo Ultra Sound done....surgery the next day Sept. 14. My tumor was in the head of the pancreas. It was incapsulated. I'm blessed to have been where I needed to be. They think I was born with it. It was hell living the way I was, so many things are clear to me now. Hoping for a good recovery.

In addition to the information I sent yesterday and in reference to your question about not being able to locate the tumor:
I was still symptomatic after my first surgery and 18 months later the hospital where I was receiving treatment could not find additional tumors. I ended up at Mayo for a second opinion and through several testing methods Mayo was able to locate and remove 9 additional tumors. There are incredible resources and technology available for patients with insulinomas at Mayo!

Hello @yinggang and welcome to Mayo Connect,

I so appreciate your sharing your experience with insulinoma and your surgery at Mayo last year. You have provided @amya (as well as the rest of us) with a lot of good information.

Since your surgery was last year, how are you feeling now? What type of follow up are you receiving?

@amya

Hi Amya,

Very sorry to hear you are insulinoma patient. I was insulinoma patient last year and had surgery last year at Mayo. In addition to do imaging work, Ca stimulation test could be performed as well. Via the test, will be able to determine tumor location, e.g tail or head part of pancreas. I attached a paper published by Mayo team, could give you some idea about the test.

Good luck and hope everything goes smoothly!