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.

marilyn2525 | @marilyn2525 | Sep 19, 2018

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

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

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 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?

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!

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)

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.

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
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!

Yinggang | @yinggang | 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

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!

Shared files

thompson2015 (thompson2015.pdf)

Teresa, Volunteer Mentor | @hopeful33250 | Sep 26, 2018

In reply to @yinggang "@amya Hi Amya, Very sorry to hear you are insulinoma patient. I was insulinoma patient last..." + (show)

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?

ahtaylor | @ahtaylor | Sep 26, 2018

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

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!

marilyn2525 | @marilyn2525 | Sep 26, 2018

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.