1. < Neuroendocrine Tumors (NETs)

Pancreatic neuroendocrine 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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 13 2:29pm
In reply to @ahtaylor "When is your surgery? Or have you already had your surgery? If so, how did it..." + (show)
@ahtaylor

When is your surgery? Or have you already had your surgery? If so, how did it go? Just thinking about you as I know you said you were scared. Either way hope all is well!
I am going to Mayo soon for a Hepatic Artery Embolization to get to the tumors in the liver and hopefully reduce hypoglycemia symptoms.
Keep us posted and best wishes!

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Hi @ahtaylor,

I hope your surgery goes well and the hypoglycemia symptoms are reduced. Will you let me know how you are doing after your surgery?

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sshindle | @sshindle | Aug 13 7:13pm
In reply to @ahtaylor "When is your surgery? Or have you already had your surgery? If so, how did it..." + (show)
@ahtaylor

When is your surgery? Or have you already had your surgery? If so, how did it go? Just thinking about you as I know you said you were scared. Either way hope all is well!
I am going to Mayo soon for a Hepatic Artery Embolization to get to the tumors in the liver and hopefully reduce hypoglycemia symptoms.
Keep us posted and best wishes!

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My surgery is Auguat 16th. Thank you so much for the support and kind words! I wish you luck as well. Please update me on your progress!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 13 7:35pm
In reply to @sshindle "My surgery is Auguat 16th. Thank you so much for the support and kind words! I..." + (show)
@sshindle

My surgery is Auguat 16th. Thank you so much for the support and kind words! I wish you luck as well. Please update me on your progress!

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I hope all goes well on the 16th, @sshindle! Will you keep in touch?

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1 reply
ahtaylor | @ahtaylor | Aug 30 5:09pm
In reply to @hopeful33250 "I hope all goes well on the 16th, @sshindle! Will you keep in touch?" + (show)
@hopeful33250

I hope all goes well on the 16th, @sshindle! Will you keep in touch?

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Checking in to see how your surgery went and how you are feeling now? Hope all is well!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 31 6:17am
In reply to @ahtaylor "Checking in to see how your surgery went and how you are feeling now? Hope all..." + (show)
@ahtaylor

Checking in to see how your surgery went and how you are feeling now? Hope all is well!

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HI @ahtaylor

I was thinking about you as well and wondering if you had the Hepatic Artery Embolization yet. If so, I'd love to hear from you.

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ahtaylor | @ahtaylor | Aug 31 6:25am

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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 31 6:35am
In reply to @ahtaylor "Thanks for checking! I had the embolization on 8/14. It went well and recovery for the..." + (show)
@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?

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ahtaylor | @ahtaylor | Aug 31 7:48am

Just overnight after the procedure for observation purposes.

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jasonrex86 | @jasonrex86 | Sep 11 3:37pm

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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 11 5:00pm
In reply to @jasonrex86 "Hello all, I have two insulinomas on my pancreas and recently underwent laparoscopic surgery in NYC...." + (show)
@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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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?

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