1. < Neuroendocrine Tumors (NETs)

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) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018

Hello @lolorn and welcome to Mayo Connect

While I am sorry to hear of your recent diagnosis of insulinoma I am sure that you must be relieved to have a diagnosis that you can now work with. I am pleased that you are looking for a surgeon who is an expert in this matter. It is important when dealing with any type of NETs that you find the most experienced, accomplished surgeon that is available. Mayo Clinic would be an excellent choice. Here is some additional information about insulinoma from the NIH website, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3087741/

Since you live in Colorado you might also talk with Eric Liu, MD (Surgical Oncology) at The Rocky Mountain Cancer Centers. I am not sure if he treats insulinoma, but I've heard good things about him from other NET patients (who do not have insulinoma) and his office is in Denver. Here is a website with more information about him, https://www.carcinoid.org/doctor/eric-liu-md-surgical-oncology/.

With blood sugar numbers so low, I can imagine how difficult it must be work or carry on a somewhat normal life. How are you limited by your symptoms?

I look forward to hearing from you again as you work through this difficult diagnosis and seek treatment.

Teresa

REPLY
debf | @debf | Mar 31, 2018

Has anyone mentioned Dr. Eric Liu, Rocky Mountain Cancer Center to you? He is an expert in NETs and is in Denver.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018

Hello @debf

Yes, I've heard good things about him - I believe that he has NETs himself and recently had surgery. Here is a link to a website about him, https://www.carcinoid.org/doctor/eric-liu-md-surgical-oncology/. I do not know for sure if he deals with Insulinoma though. It is important to seek out specialists for the specific type of NETs. Mayo is always a good choice.

Teresa

REPLY
ahtaylor | @ahtaylor | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@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

Lolorn,Good to hear from you. I have had multiple insulinomas. I have had two surgeries to to to remove a total of 11 tumors. My first surgery was in NC and my second was at Mayo in Rochester. I have a great endocrinologist there that continues to follow me. I had a great surgeon as well. I would be happy to share my experiences with you either by phone or email. I highly recommend Mayo. You have my email and you may private message me on this site. Best wishes. Allison 

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@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

Hello @ahtaylor

It is so good to hear from you. As you had not posted after your surgery at Mayo last year, I've wondered how you are doing. I'm glad to hear that your surgery at Mayo was successful and you had such good results and were happy with your medical team.

I appreciate your sharing with @lolorn. I know she will appreciate your personal recommendation.

I look forward to hearing from you again.Once again I'm so pleased that all is going so well for you.

Teresa

REPLY
ahtaylor | @ahtaylor | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@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

Thanks. I am doing well. I will be coming back to Mayo in June for follow up. My issues are not entirely resolved so they are continuing to monitor for recurrence. I am always happy to help someone else going through the process!

Allison

REPLY
lolorn | @lolorn | Mar 31, 2018

Hello,

Thanks to each of you for the helpful info, I really appreciate your replies. I will definitely be researching Dr Liu to see what his experience with insulinomas might be. Allison, I would really like to chat with you and I will be in contact soon - thank you!

Teresa, you had asked how I am limited by my symptoms. Now that these hypos seem to be happening more frequently and can be so random it has had a huge impact on myself and my families lives. I had to stop mountain biking and hiking and basically exercising in general because it seems to bring on the hypos. Two weeks ago I caught this cold and cough that has been going around. I completely lost my appetite for about 4 days and boy was I in trouble. I could not get my BS above 50 for several days. I went to the ER at one point and they had absolutely no clue what was going on. They sent me for a CT (because I was also having some abd pain) but it was not set properly to have a chance at finding an insulinoma. The ER Dr told me that I needed to stop driving. One good thing that came from the ER visit is that I was able to get into the endocrinologist much sooner than my original appt which was 3 mos out :-(. In January my primary "ruled out" an insulinoma after checking my labs. The endocrinologist informed me that all of those labs must be rechecked when my BS is low and that none of the labs that my primary checked told him anything. So I was sent off last week for a 72hr fast in the hospital and those lab results are all pointing to an insulinoma. My husband has had to cancel business trips b/c I couldn't be home alone with our children and or safely drive them to school/events. I will say that after reading as much as I possibly can on insulinomas I do consider myself fortunate. I happen to be an RN and therefore familiar with symptoms of hypoglycemia. When my lips started tingling and I was getting diaphoretic and shaky I instantly thought hypoglycemia. I went and bought a glucometer the next day and waited for the symptoms to come back. The first time that I was symptomatic and was able to actually check my BS, it was 31!!! I couldn't believe it! It was extremely helpful to my Endocrinologist to have a log of all of my hypos for the past 3 mos but it has been extremely frustrating trying to find someone that knows anything about insulinomas or diagnosing me. I have an MRI scheduled for Tuesday...the search is on.

Thanks again for the info.

Lori

REPLY
1 reply
ahtaylor | @ahtaylor | Mar 31, 2018
In reply to @lolorn "Hello, Thanks to each of you for the helpful info, I really appreciate your replies. I..." + (show)
@lolorn

Hello,

Thanks to each of you for the helpful info, I really appreciate your replies. I will definitely be researching Dr Liu to see what his experience with insulinomas might be. Allison, I would really like to chat with you and I will be in contact soon - thank you!

Teresa, you had asked how I am limited by my symptoms. Now that these hypos seem to be happening more frequently and can be so random it has had a huge impact on myself and my families lives. I had to stop mountain biking and hiking and basically exercising in general because it seems to bring on the hypos. Two weeks ago I caught this cold and cough that has been going around. I completely lost my appetite for about 4 days and boy was I in trouble. I could not get my BS above 50 for several days. I went to the ER at one point and they had absolutely no clue what was going on. They sent me for a CT (because I was also having some abd pain) but it was not set properly to have a chance at finding an insulinoma. The ER Dr told me that I needed to stop driving. One good thing that came from the ER visit is that I was able to get into the endocrinologist much sooner than my original appt which was 3 mos out :-(. In January my primary "ruled out" an insulinoma after checking my labs. The endocrinologist informed me that all of those labs must be rechecked when my BS is low and that none of the labs that my primary checked told him anything. So I was sent off last week for a 72hr fast in the hospital and those lab results are all pointing to an insulinoma. My husband has had to cancel business trips b/c I couldn't be home alone with our children and or safely drive them to school/events. I will say that after reading as much as I possibly can on insulinomas I do consider myself fortunate. I happen to be an RN and therefore familiar with symptoms of hypoglycemia. When my lips started tingling and I was getting diaphoretic and shaky I instantly thought hypoglycemia. I went and bought a glucometer the next day and waited for the symptoms to come back. The first time that I was symptomatic and was able to actually check my BS, it was 31!!! I couldn't believe it! It was extremely helpful to my Endocrinologist to have a log of all of my hypos for the past 3 mos but it has been extremely frustrating trying to find someone that knows anything about insulinomas or diagnosing me. I have an MRI scheduled for Tuesday...the search is on.

Thanks again for the info.

Lori

Jump to this post

I look forward to talking with you. I am a RN as well and had some similar experiences. Having the knowledge about symptoms is helpful. It is rare and a difficult diagnosis at best. Happy to help in anyway I can. 
Allison

REPLY
Moderator
Lisa Lucier, Moderator | @lisalucier | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@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 -- good to hear from you. So glad you liked your surgeon and endocrinologist, and that the 11 tumors are gone. I see that you are returning to Mayo in June so they can keep monitoring your condition and help you with any unresolved issues.

You may notice I removed your email and other contact information from your post. We do this to protect your privacy on a public site so that members don't receive any unwanted emails or SPAM from third-party accounts. We recommend members share their contact info using the private message function.

Your willingness to help other members is wonderful.

Would you have any recommendations for the recovery after surgery like yours? Anything that was particularly helpful?

REPLY
ahtaylor | @ahtaylor | Mar 31, 2018
In reply to @lolorn "Hello, I have a new diagnosis of an insulinoma after months of hypos in 30’s and..." + (show)
@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

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

REPLY
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