1. < Neuroendocrine Tumors (NETs)
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Pancreatic NETs: Looking to connect with anyone with insulinoma

Posted by links @links, Jan 19, 2023

Looking to connect with anyone who has an insulinoma. My tumor presents in the pancrease. I currently have chemotherapy bi weekly since July 2022. This is a rare combination and have struggled with regulating my sugars and hoping to meet someone else with a similar diagnosis.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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zacharycat | @zacharycat | Mar 14 11:13am
In reply to @jasonrex86 "Thank you for posting their links. I starting experiencing periodic hypoglycemia about a year and a..." + (show)
Profile picture for jasonrex86 @jasonrex86

Thank you for posting their links.
I starting experiencing periodic hypoglycemia about a year and a half ago. In the beginning, my endocrinologist said it was most likely prediabetes. For over a year I didn't take it very serious because I have no family history of diabetes and I'm otherwise healthy and in good physical shape. He did mention an insulinoma but indicated that it was extremely rare. About three months ago things got much worse as I was experiencing hypoglycemia many times a day. I had blood drawn after fasting for about 14 hours, my blood sugar was a 31 with elevated insulin levels. I was prescribed diazoxide but could not tolerate it as it was counter productive because I was nauseous all the time and struggled to eat anything.
I've had 3 CT scans, an MRI, and a PET scan, all appeared normal. An EUS revealed 2 insulinomas in the pancreas. While having laparoscopic surgery it was determined that they couldn't get them out without performing a whipple procedure so they're now advising having one of them ablated using RFA via another EUS. The other mass is very small and they're advising to do nothing to it for now.
I'm currently managing my sugar level with a dexcom sensor and eating many meals a day. I wake up at least once every night and sometimes as many as three times a night to raise my blood sugar.
I'm still waiting for an appointment at Mayo but hoping it will be in a couple weeks so I can get a second opinion before having RFA. Is there anyone on here that has treated their insulinoma with RFA? My understanding is that they frequently grow back over time.

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@jasonrex86 I was taking diazoxide, but it wasn't helping much and it caused fluid retention. My endocrinologist said it was a band-aid at best.
My meter would also go low toward morning. Frankly after a while I ignored it as wasn't needing much energy at 4 AM anyway. Probably a bad idea but I got sick of being woke up in the hospital by techs poking my finger and then nurses telling me to drink fruit juice so they could measure it again in 15 mins.

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ahtaylor | @ahtaylor | Mar 15 9:08am
In reply to @jasonrex86 "Thank you for posting their links. I starting experiencing periodic hypoglycemia about a year and a..." + (show)
Profile picture for jasonrex86 @jasonrex86

Thank you for posting their links.
I starting experiencing periodic hypoglycemia about a year and a half ago. In the beginning, my endocrinologist said it was most likely prediabetes. For over a year I didn't take it very serious because I have no family history of diabetes and I'm otherwise healthy and in good physical shape. He did mention an insulinoma but indicated that it was extremely rare. About three months ago things got much worse as I was experiencing hypoglycemia many times a day. I had blood drawn after fasting for about 14 hours, my blood sugar was a 31 with elevated insulin levels. I was prescribed diazoxide but could not tolerate it as it was counter productive because I was nauseous all the time and struggled to eat anything.
I've had 3 CT scans, an MRI, and a PET scan, all appeared normal. An EUS revealed 2 insulinomas in the pancreas. While having laparoscopic surgery it was determined that they couldn't get them out without performing a whipple procedure so they're now advising having one of them ablated using RFA via another EUS. The other mass is very small and they're advising to do nothing to it for now.
I'm currently managing my sugar level with a dexcom sensor and eating many meals a day. I wake up at least once every night and sometimes as many as three times a night to raise my blood sugar.
I'm still waiting for an appointment at Mayo but hoping it will be in a couple weeks so I can get a second opinion before having RFA. Is there anyone on here that has treated their insulinoma with RFA? My understanding is that they frequently grow back over time.

Jump to this post

@jasonrex86 I have not done RFA but I have had a hepatic artery embolization to treat the liver tumors. I was able to get 18 months of significant relief from hypoglycemia - averaging about 1-3 episodes a month. I continue to get monthly octreotide injections as well. The hypoglycemia is starting to increase again - now averaging an episode about every 1-3 days. Keeping in communication with my endocrinologist at Mayo for next steps. Wishing you the best!

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jasonrex86 | @jasonrex86 | Mar 15 12:41pm
In reply to @sunflower1398 "Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a..." + (show)
Profile picture for sunflower1398 @sunflower1398

Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a benign insulinoma on pancreas head. All other organs appear normal. Surgeon suggested Whipple procedure. Terrifird! Mri and pet scan scheduled. How do I get second options from a high volume hospitals? Hoping for enucleation or ablasion. Thanks for any info.

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@sunflower1398
I would recommend getting multiple opinions. Most places won’t hesitate to see you especially after you tell them you already have a diagnosed insulinoma. You could also ask your current doctor/surgeon if they would suggest someone if you want a second opinion. I live near NYC and traveled halfway across the country to Mayo Clinic in Rochester. I highly recommend Dr Michael Kendrick. He performs the whipped laparoscopically and robotically. My insulinoma was also on the head of the pancreas. Best of luck to you, if you have any questions feel free to reach out.

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Teresa, Volunteer Mentor | @hopeful33250 | Mar 17 6:11pm
In reply to @sunflower1398 "Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a..." + (show)
Profile picture for sunflower1398 @sunflower1398

Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a benign insulinoma on pancreas head. All other organs appear normal. Surgeon suggested Whipple procedure. Terrifird! Mri and pet scan scheduled. How do I get second options from a high volume hospitals? Hoping for enucleation or ablasion. Thanks for any info.

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Hello @sunflower1398, and welcome to the NETs support group on Mayo Clinic Connect. You are wise to be seeking a second opinion. I highly recommend obtaining a second opinion from a NET specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.; https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

General oncologists aren't as well-versed in the latest treatments for rare cancers such as this one. I would also like to invite @ahtaylor to post with you. She has experience with insulinoma and has been actively involved in her treatment.

How do you feel when you exercise and have hypoglycemic episodes?

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ahtaylor | @ahtaylor | Mar 17 6:55pm
In reply to @sunflower1398 "Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a..." + (show)
Profile picture for sunflower1398 @sunflower1398

Hypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a benign insulinoma on pancreas head. All other organs appear normal. Surgeon suggested Whipple procedure. Terrifird! Mri and pet scan scheduled. How do I get second options from a high volume hospitals? Hoping for enucleation or ablasion. Thanks for any info.

Jump to this post

@sunflower1398 My first diagnosis was handled in NC - they were great! However, not al tumors were removed and shortly after my whipple I had recurrence of hypoglycemia. Around a year later my hypoglycemia persisted and with no identification of tumors with EUS and MRI I was referred to Mayo. Mayo identified 9 more tumors and I had a distal pancreatectomy and splectomy. Again, within months I had recurrence of hypoglycemia. Insulinomas are good at hiding from imaging and are tricky to manage at times. My primary endocrinologist referred me to Mayo and that was how I was able to secure advanced care for insulinomas. My recommendation would be a second opinion if you are not comfortable with the initial opinion. Whipple is generally curative if insulinomas are not metastatic. Whipple is a very difficult procedure. For me, mine were metastatic, so it complicated my case. Please let me know how I can assist. I am more than happy to connect further to share my experiences.

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sunflower1398 | @sunflower1398 | Mar 21 4:18pm
In reply to @hopeful33250 "Hello @sunflower1398, and welcome to the NETs support group on Mayo Clinic Connect. You are wise..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @sunflower1398, and welcome to the NETs support group on Mayo Clinic Connect. You are wise to be seeking a second opinion. I highly recommend obtaining a second opinion from a NET specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.; https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

General oncologists aren't as well-versed in the latest treatments for rare cancers such as this one. I would also like to invite @ahtaylor to post with you. She has experience with insulinoma and has been actively involved in her treatment.

How do you feel when you exercise and have hypoglycemic episodes?

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@hopeful33250 thank you. I cannot exercise. Any minor exertion,I start sweating and blurred vision. BS drops to the 30s. Have been mis diagnosed for over 10 years saying it was heat intolerance from MS or menopause.

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