1. < Neuroendocrine Tumors (NETs)

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

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@ahtaylor

Would you share with us something about the "impact of no spleen"?

Teresa

REPLY
ahtaylor | @ahtaylor | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

Jump to this post

The spleen helps fight infection. Vaccines foe pneumonia and meningitis are very important. Here is the link to Mayo information on splenectomy:https://www.mayoclinic.org/tests-procedures/splenectomy/about/pac-20395066

Allison

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

Jump to this post

@ahtaylor

Thanks for the information.

Teresa

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 6, 2018
In reply to @nancymcegg "Hi! My name is Nancy and I live in Cape Coral, Florida. I have been to..." + (show)
@nancymcegg

Hi! My name is Nancy and I live in Cape Coral, Florida. I have been to multiple doctor's and they all have come to the conclusion that I have an insulinoma. After I read up about insulinoma's I realized that I have all of the symptoms and have had them for a while. My endocrinologist admitted me to the local hospital for the 72 hour fasting glucose test and the hospital did it all wrong!! The doctors at the hospital accused me of injecting myself with insulin to cause my symptoms and the doctor ran 3 different blood tests looking for every type of artificial insulin to prove his theory. When they all came back negative he told me that insulinomas are extremely rare and there was no way I could have one. I never saw him again. He gave orders for the nurse to do all of the blood work at 36 hrs when my glucose level was at 60 instead of waiting the full 72. After the nurse took the blood work she gave me the glucagon . My first glucose check at 5 minutes was in the 30s so the nurse freaked out and gave me second dose. She checked my glucose again 5 minutes after that and it was still not coming up so she gave me a 3rd dose. At that point a felt like I was going to have a heart attack because my heart began pounding and I became nauseous. My next 5 minute glucose test was 280 so the nurse decided to leave me alone and told me to check my own glucose every 15 minutes and if it dropped below 90 I needed to drink orange juice and/or eat something. I later found out that the correct blood test weren't even ordered and then the nurse giving me 3 doses of glucagon invalidated everything. The doctor refused to come see me to answer my questions and had the nurse discharge me. To make a long story short I went to see a gastroenterologist and he did an endoscopic ultrasound yesterday but he couldn't find the tumor. This is going to sound strange but after the test it was like my pancreas went nuts because I no matter what I ate I couldn't get my glucose above 68. Today was better but I still couldn't get my glucose above 84. My insurance won't approve the PET scan that my doctor ordered so now he is trying to get some much less expensive scan approved but he doubts it will help locate the tumor. I don't know where to go or who to turn to but I can't go on feeling as bad as I feel. I can't stand eating every hour or two and nothing tastes good anymore.

Does anyone have any suggestions?

Nancy

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@nancymcegg Hello Nancy,

Just wanted to drop you a note to check in and see how you are doing. I hope that you have found some answers to your diagnosis and have a treatment plan in place.

I would enjoy hearing from you again and hear how you are coming along.

Teresa

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marilyn2525 | @marilyn2525 | Sep 13, 2018

Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals) waiting to have surgery in the morning to remove my insulinoma. Not sure how big the surgery but I know it may be Whipple. I'll try to write about it afterwords.

REPLY
4 replies
ahtaylor | @ahtaylor | Sep 13, 2018
In reply to @marilyn2525 "Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals)..." + (show)
@marilyn2525

Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals) waiting to have surgery in the morning to remove my insulinoma. Not sure how big the surgery but I know it may be Whipple. I'll try to write about it afterwords.

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Having been there twice, I will say: Best wishes with your surgery! Take care.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 14, 2018
In reply to @marilyn2525 "Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals)..." + (show)
@marilyn2525

Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals) waiting to have surgery in the morning to remove my insulinoma. Not sure how big the surgery but I know it may be Whipple. I'll try to write about it afterwords.

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Hello @marilyn2525, I'm so glad that you reached out to the Mayo Clinic Connect NET community,

My thoughts and prayers are with you this morning. I will look forward to hearing from you after you recover from your surgery.

REPLY
Tresjur | @tresjur | Sep 14, 2018
In reply to @marilyn2525 "Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals)..." + (show)
@marilyn2525

Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals) waiting to have surgery in the morning to remove my insulinoma. Not sure how big the surgery but I know it may be Whipple. I'll try to write about it afterwords.

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Sending positive energy your way for your surgery and recovery. Please keep in touch as your experience may shed valuable information to others in the group. Best wishes.

REPLY
Tom Wilson | @tomewilson | Sep 14, 2018
In reply to @marilyn2525 "Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals)..." + (show)
@marilyn2525

Hi my name is Marilyn, I'm at Mayo Clinic now ( actual one of their hospitals) waiting to have surgery in the morning to remove my insulinoma. Not sure how big the surgery but I know it may be Whipple. I'll try to write about it afterwords.

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My wife had two major NET surgeries at Methodist. Everything went as expected and she was well taken care of by the highly trained, caring and compassionate staff. Prayers to you for your successful surgery.

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1 reply
marilyn2525 | @marilyn2525 | Sep 19, 2018
In reply to @tomewilson "My wife had two major NET surgeries at Methodist. Everything went as expected and she was..." + (show)
@tomewilson

My wife had two major NET surgeries at Methodist. Everything went as expected and she was well taken care of by the highly trained, caring and compassionate staff. Prayers to you for your successful surgery.

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I'm still here after my insulinoma was removed on the 14, Sept. it's a big surgery. Can't type long. Glad I'm here. Team has been great. No cancer found, tumor was in the head of pancreas. More later

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