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 | Sep 25, 2018
In reply to @amya "I was diagnosed with insulinoma last week based on an outpatient fasting test. I only needed..." + (show)
@amya

I was diagnosed with insulinoma last week based on an outpatient fasting test. I only needed to fast overnight for my blood sugar to reach 48. I live in a small community in Wisconsin. My endocrinologist has never treated someone with insulinoma. I've been managing my symptoms for a couple years with food. She has advised I start diazoxide. We've done a CT, RUQ US and I'm having a MRI to look at my pituitary today. So far she can't find the tumor. My questions are:
1. Have you taken diazoxide? Any comments on that medication?
2. Has anyone had a tumor they couldn't find with imaging? What did they do?
3. Overall thoughts about Mayo's program. Anyone you would suggest I see?
4. How did your insurance cover being seen at Mayo, presumable out of network?
Thanks!

Jump to this post

@amya
You definitely need to be seen by a NET specialist and as Tom Wilson mentioned, Mayo is probably the closest place to you. All of the tests that you have had already, might not show a NET, you might need a 68Ga DOTATATE Positron Emission Tomography (PET) it picks up NETs but let the Mayo folks figure that out for you.

Here is a discussion about that, https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/

Thank you @tomewilson for offering to help. Very kind of you!

REPLY
Tom Wilson | @tomewilson | Sep 25, 2018
In reply to @amya "I was diagnosed with insulinoma last week based on an outpatient fasting test. I only needed..." + (show)
@amya

I was diagnosed with insulinoma last week based on an outpatient fasting test. I only needed to fast overnight for my blood sugar to reach 48. I live in a small community in Wisconsin. My endocrinologist has never treated someone with insulinoma. I've been managing my symptoms for a couple years with food. She has advised I start diazoxide. We've done a CT, RUQ US and I'm having a MRI to look at my pituitary today. So far she can't find the tumor. My questions are:
1. Have you taken diazoxide? Any comments on that medication?
2. Has anyone had a tumor they couldn't find with imaging? What did they do?
3. Overall thoughts about Mayo's program. Anyone you would suggest I see?
4. How did your insurance cover being seen at Mayo, presumable out of network?
Thanks!

Jump to this post

I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has been seen @ Mayo 3 1/2 years. She’s has 2 surgeries, regular labs, scans and office visits. We are a 4 hour drive.

All will agree results are better when seen at a high volume speciality center like Mayo. This is based on evidence.

If there are no recognized NET specialists ‘in- network’, then you should file a ‘grievance’ with your insurer. I’m happy to help you with the language and letter. I’ve been through this several times.

REPLY
1 reply
amya | @amya | Sep 25, 2018

I was diagnosed with insulinoma last week based on an outpatient fasting test. I only needed to fast overnight for my blood sugar to reach 48. I live in a small community in Wisconsin. My endocrinologist has never treated someone with insulinoma. I've been managing my symptoms for a couple years with food. She has advised I start diazoxide. We've done a CT, RUQ US and I'm having a MRI to look at my pituitary today. So far she can't find the tumor. My questions are:
1. Have you taken diazoxide? Any comments on that medication?
2. Has anyone had a tumor they couldn't find with imaging? What did they do?
3. Overall thoughts about Mayo's program. Anyone you would suggest I see?
4. How did your insurance cover being seen at Mayo, presumable out of network?
Thanks!

REPLY
4 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 20, 2018
In reply to @marilyn2525 "I had the surgery, it was a big one. Could have been worst. I'm still here...." + (show)
@marilyn2525

I had the surgery, it was a big one. Could have been worst. I'm still here. Took out my insulinoma , no cancer.

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@marilyn2525

I so appreciate your posting and I'm so glad for the success of the surgery and the results. That is such good news!

When you feel stronger, will you post again?

REPLY
1 reply
marilyn2525 | @marilyn2525 | Sep 19, 2018
In reply to @ahtaylor "Having been there twice, I will say: Best wishes with your surgery! Take care." + (show)
@ahtaylor

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

Jump to this post

I had the surgery, it was a big one. Could have been worst. I'm still here. Took out my insulinoma , no cancer.

REPLY
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

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.

REPLY
1 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.

Jump to this post

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
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.

Jump to this post

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
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.

Jump to this post

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

REPLY
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