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.

I am also not familiar with the insulinoma work at Johns Hopkins. I can only speak to my experience at Mayo and in NC. I am fortunate that my symptoms are only associated with the hypoglycemia episodes. I am sorry to hear you have issues that are broader and associated with the insulinoma. My experience on flights, especially to Rochester, is they have means to take good care of passengers that have difficulty. I travel about 4 hours by plane to Rochester about every 6 months. For me, it is worth the travel for the care I receive at Mayo. I hope you are able to find a solution that works best for you. Please let me know if there is other information I can provide. Best wishes to you and in your journey.

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@kapple

hi hopeful, My blood work was always within range however I suffered from Extreme fatigue and weakness, diabetes like symptoms even including neuropathy -a gallium 68 scan confirmed a small insulinoma which would explain a lot of my issues- I dread the thought of flying to the East Coast due to my condition however I will check into it thank you for the information- I have also heard of John Hopkins that deals with an insulinoma are you familiar with this hospital?

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Kappie, I wanted to clarify that Mayo Clinic has 3 locations: Rochester, Minnesota where @ahtaylor sought treatment as well as in Phoenix, Arizona and Jacksonville, Florida. Perhaps the MN or AZ locations would be more convenient for you. You can always call the appointment office to find out more about our specialists and expertise in treating insulinoma. Here's the contact information for all 3 campuses: http://mayocl.in/1mtmR63

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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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There is a group called best doctors that when given your symptoms they can help you locate specialist in the area that’s needed I believe you can find their number online and is usually available through insurance companies

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@colleenyoung

Hi @ahtaylor and welcome to the NETs group. I’m glad you joined us here as well as the Diabetes/Endocrine group.
If you read this discussion thread — Carcinoid http://mayocl.in/2j1tL0M –, you’ll get to know pretty much everyone participating in the group. I’m specifically tagging @gaylejean on this conversation as she may be able to share a bit more about what you can expect at Mayo Clinic, although I don’t know if she had insulinoma testing. I’m also bringing @ridgerunner in as she manages hypoglycemia.

AHTaylor, you mention “I have walked down this path once already.” What did you mean by that?

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gaylejean:I’m interested in any information about the mayo clinic as I have an appointment with an endocrinologist July 6 for insulinoma -ridgerunner also interested in how to handle hypoglycemia

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@kapple

gaylejean:I’m interested in any information about the mayo clinic as I have an appointment with an endocrinologist July 6 for insulinoma -ridgerunner also interested in how to handle hypoglycemia

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@kapple what type of information would you find most helpful about Mayo Clinic ahead of your July 6th appointment so members can help point you in the right direction on Connect for resources and/or share their experience?

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Here are some things I have found helpful in my visits:
1. If you have not already – Download the Mayo Clinic app – it is very useful for your appointment schedule as well as test results later. There is a patient guide for your appointments that will tell you everything you need to know for preparation (i.e. whether to fast, when/what you can eat/drink, restrictions, etc)
2. If you are coming to the Rochester, MN clinic there are several hotels that connect directly to the clinic – if you are seeking convenience and ease of getting around these are good places to stay
3. Don't be afraid to ask for directions/help – I have found everyone to be very helpful and accommodating 🙂

Here are some things I have found helpful in managing hypoglycemia:
1. Of course, always carrying glucose tablets and glucagon with me
2. I also wear a CGM, which over time has becoming very beneficial in knowing my patterns and what is likely to lead to hypoglycemia. My husband and my children (17 and 20) get alerts on their phones if I have an episode so they can check on me. My husband also has my blood sugar readings on his phone.
3. Low carb diet works the best for me for diet control of hypoglycemia

I hope you will have a great experience and get the answers you need. If you have specific questions about the visit or managing hypoglycemia, please don't hesitate to reach out. Always happy to help!! Best wishes!!

REPLY
@ahtaylor

Here are some things I have found helpful in my visits:
1. If you have not already – Download the Mayo Clinic app – it is very useful for your appointment schedule as well as test results later. There is a patient guide for your appointments that will tell you everything you need to know for preparation (i.e. whether to fast, when/what you can eat/drink, restrictions, etc)
2. If you are coming to the Rochester, MN clinic there are several hotels that connect directly to the clinic – if you are seeking convenience and ease of getting around these are good places to stay
3. Don't be afraid to ask for directions/help – I have found everyone to be very helpful and accommodating 🙂

Here are some things I have found helpful in managing hypoglycemia:
1. Of course, always carrying glucose tablets and glucagon with me
2. I also wear a CGM, which over time has becoming very beneficial in knowing my patterns and what is likely to lead to hypoglycemia. My husband and my children (17 and 20) get alerts on their phones if I have an episode so they can check on me. My husband also has my blood sugar readings on his phone.
3. Low carb diet works the best for me for diet control of hypoglycemia

I hope you will have a great experience and get the answers you need. If you have specific questions about the visit or managing hypoglycemia, please don't hesitate to reach out. Always happy to help!! Best wishes!!

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ahtaylor………could you tell me what hotels you find are the easiest for getting to the clinic via subway or skywalk?
Thanks
Steph

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I think there are several that connect. I have found the Marriott to be one that is very convenient to most of the clinic visits and testing I have had and we have stayed there several visits. We have also stayed at the Residence Inn and found that one to be convenient as well. Those are the only 2 I have stayed at that were connected. I don't know but I would think there is a list of hotels that are connected by skywalk or subway. Depending on where most of your appointments are will also make a difference. Thanks.

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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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I go to Mayo for NETS and had a double transplant there. Dr. Halfdanarson is recognized as world class and a NET specialist as is Dr. Hobday. Mayo saved my life. I would highly recommend Mayo. Best in the world. Since you are in CO, if you cant get there, Dr Liu is at Rocky Mountain Cancer Center in Denver. He is also highly regarded and considered world class. 🙏🏻🙏🏻

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@skhollandmt

ahtaylor………could you tell me what hotels you find are the easiest for getting to the clinic via subway or skywalk?
Thanks
Steph

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My family stayed at Kahler directly connected. Not too bad. Hilton has completed HGI. Nice. Can find on web with search.

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@skhollandmt

ahtaylor………could you tell me what hotels you find are the easiest for getting to the clinic via subway or skywalk?
Thanks
Steph

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Hi Steph, Do you know about the free Concierge Services at Mayo Clinic?

You can get your travel and accommodation questions answered by someone at the free Concierge Services at Mayo Clinic. The staff at the concierge desk can help with hotel/lodging recommendations, according to your wishes of proximity, price and space requirements. Here is how you can contact them:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu

Let me connect you with @lmindela

REPLY
@ahtaylor

Here are some things I have found helpful in my visits:
1. If you have not already – Download the Mayo Clinic app – it is very useful for your appointment schedule as well as test results later. There is a patient guide for your appointments that will tell you everything you need to know for preparation (i.e. whether to fast, when/what you can eat/drink, restrictions, etc)
2. If you are coming to the Rochester, MN clinic there are several hotels that connect directly to the clinic – if you are seeking convenience and ease of getting around these are good places to stay
3. Don't be afraid to ask for directions/help – I have found everyone to be very helpful and accommodating 🙂

Here are some things I have found helpful in managing hypoglycemia:
1. Of course, always carrying glucose tablets and glucagon with me
2. I also wear a CGM, which over time has becoming very beneficial in knowing my patterns and what is likely to lead to hypoglycemia. My husband and my children (17 and 20) get alerts on their phones if I have an episode so they can check on me. My husband also has my blood sugar readings on his phone.
3. Low carb diet works the best for me for diet control of hypoglycemia

I hope you will have a great experience and get the answers you need. If you have specific questions about the visit or managing hypoglycemia, please don't hesitate to reach out. Always happy to help!! Best wishes!!

Jump to this post

This is a stellar post @ahtaylor! That’s information one just can’t get anywhere else.

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