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.

I ended up going to Mayo Clinic for a Whipple Procedure. Went to 3 of the best hospitals in the country and they all said do NOT do radio frequency ablasion. Very happy I did the Whipple and I’ve healed up with no complications or stress that the tumor will grow back. If you’re dead set on having RFA, I would get opinions from multiple doctors before doing anything.

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@jasonrex86

Hello all,
I have two insulinomas on my pancreas and recently underwent laparoscopic surgery in NYC. While in surgery it was determined that the larger insulinoma was too deep in the head of the pancreas and within a few millimeters of the pancreatic duct so they decided not to remove anything and recommended that I undergo Radio Frequency Ablasion via Endoscopic Ultrasound. I have some concerns because my doctor told me to ignore the smaller of the two masses and they may not be able to do a needle biopsy of the larger mass before ablating it. I'm concerned because in my 30's and afraid that the mass will grow back if the whole thing isn't ablated. Also I wont have a biopsy to confirm it's not cancerous. Doctors keep telling me not to worry about things because they're so rare like having an insulinoma in the first place or having multiple ones but I seem to keep falling into these rare circumstances. Now they're telling me not to worry about it being cancerous because it's so rare.
I've decided I need a second opinion and I'm just starting the process at Mayo Clinic in Rochester. Does anyone have any experience with multiple Insulinomas and experience with Radio Frequency Ablasion?
Thanks!

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I ve done Radio Frequency Ablasion in taiwan and it is really good result but still have slight low blood sugar. No more pass out like before. I'm located in NYC and want to go for the top doctor to complete the Ablasion again. Would you tell me more about your doctor using Ablasion?

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@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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My husband has had the insulinoma metastasized to liver since 2022. He also couldn’t do the diazoxide but is able to do octreotide. Everolimus also works well . Try cornstarch mixed in some bouillon or pudding it helps stabilize sugars for a longer period. Our best to you.

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@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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Sorry for the delay in responding. Where are things today? Any changes? I have a pancreatic NET that has spread to my liver. I found out on 8/22. My only option then, and now, is chemo. But, I am ok living that way.

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@hopeful33250

Hello @jasonrex86 and welcome to the NETs support group on Mayo Connect. I'm so glad to hear that you are panning on getting a second opinion at Mayo. We have many members who have experience with insulinomas, and I'll tag them so that they can respond to you, @ahtaylor (who recently had an embolization at Mayo Clinic in Rochester), @tomrennie and @pavlina60.

If you would like to read more about their experiences, they have shared their stories on the Mayo Connect Spotlights. Here are the links to those Spotlights:
--@tomrennie
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/the-world-aint-all-sunshine-and-rainbows-meet-tomrennie/
--@pavlina60
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/a-scientists-approach-to-helping-others-meet-pavlina60/
--@ahtaylor
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/
Have you had problems with your blood sugar numbers, @jasonrex86?

Jump to this post

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.

REPLY
@jasonrex86

Hello all,
I have two insulinomas on my pancreas and recently underwent laparoscopic surgery in NYC. While in surgery it was determined that the larger insulinoma was too deep in the head of the pancreas and within a few millimeters of the pancreatic duct so they decided not to remove anything and recommended that I undergo Radio Frequency Ablasion via Endoscopic Ultrasound. I have some concerns because my doctor told me to ignore the smaller of the two masses and they may not be able to do a needle biopsy of the larger mass before ablating it. I'm concerned because in my 30's and afraid that the mass will grow back if the whole thing isn't ablated. Also I wont have a biopsy to confirm it's not cancerous. Doctors keep telling me not to worry about things because they're so rare like having an insulinoma in the first place or having multiple ones but I seem to keep falling into these rare circumstances. Now they're telling me not to worry about it being cancerous because it's so rare.
I've decided I need a second opinion and I'm just starting the process at Mayo Clinic in Rochester. Does anyone have any experience with multiple Insulinomas and experience with Radio Frequency Ablasion?
Thanks!

Jump to this post

Hello @jasonrex86 and welcome to the NETs support group on Mayo Connect. I'm so glad to hear that you are panning on getting a second opinion at Mayo. We have many members who have experience with insulinomas, and I'll tag them so that they can respond to you, @ahtaylor (who recently had an embolization at Mayo Clinic in Rochester), @tomrennie and @pavlina60.

If you would like to read more about their experiences, they have shared their stories on the Mayo Connect Spotlights. Here are the links to those Spotlights:
--@tomrennie
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/the-world-aint-all-sunshine-and-rainbows-meet-tomrennie/
--@pavlina60
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/a-scientists-approach-to-helping-others-meet-pavlina60/
--@ahtaylor
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/
Have you had problems with your blood sugar numbers, @jasonrex86?

REPLY

Hello all,
I have two insulinomas on my pancreas and recently underwent laparoscopic surgery in NYC. While in surgery it was determined that the larger insulinoma was too deep in the head of the pancreas and within a few millimeters of the pancreatic duct so they decided not to remove anything and recommended that I undergo Radio Frequency Ablasion via Endoscopic Ultrasound. I have some concerns because my doctor told me to ignore the smaller of the two masses and they may not be able to do a needle biopsy of the larger mass before ablating it. I'm concerned because in my 30's and afraid that the mass will grow back if the whole thing isn't ablated. Also I wont have a biopsy to confirm it's not cancerous. Doctors keep telling me not to worry about things because they're so rare like having an insulinoma in the first place or having multiple ones but I seem to keep falling into these rare circumstances. Now they're telling me not to worry about it being cancerous because it's so rare.
I've decided I need a second opinion and I'm just starting the process at Mayo Clinic in Rochester. Does anyone have any experience with multiple Insulinomas and experience with Radio Frequency Ablasion?
Thanks!

REPLY

Just overnight after the procedure for observation purposes.

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@ahtaylor

Thanks for checking! I had the embolization on 8/14. It went well and recovery for the first couple of weeks has been as expected. Good news is a significant reduction in hypoglycemia 😊. Overall doing well😊

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Oh, that is great news! I'm pleased for you. How long were you hospitalized after the surgery?

REPLY

Thanks for checking! I had the embolization on 8/14. It went well and recovery for the first couple of weeks has been as expected. Good news is a significant reduction in hypoglycemia 😊. Overall doing well😊

REPLY
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