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) group.

@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

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Thanks!Each surgery and recovery is really dependent on the location of the tumor(s). My first surgery was a modified whipple procedure where intestines were rerouted and recovery was impacted by how quickly my intestines started functioning again (not very quickly). My second surgery removed the distal part of my pancreas and my spleen. The impact of no spleen is lifelong. The surgeon is the best person to assist with expectations and recovery. 
Allison

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@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

Jump to this post

@ahtaylor

Would you share with us something about the "impact of no spleen"?

Teresa

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@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

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The spleen helps fight infection. Vaccines foe pneumonia and meningitis are very important. Here is the link to Mayo information on splenectomy:https://www.mayoclinic.org/tests-procedures/splenectomy/about/pac-20395066

Allison

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@lolorn

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

Jump to this post

@ahtaylor

Thanks for the information.

Teresa

REPLY

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

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@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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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.

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@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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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.

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@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.

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@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

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@ahtaylor

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

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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 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?

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