NET - Insulinoma

As you may already know ( I did reply last week ) I had surgery at Mayo for the removal of my insulinoma tumor in the pancreas near the neck / head in 2018 Sept. If your reading this you may already know that first you must have the 72 hr fast to prove that you have it ( Dr at Mayo believed I had it right off. Then once proved they do a ESU and CT Scan to locate it. Mine was easily seen. Next step to remove...I understand that depending on your team, removal could be done through a less invasive procedure or full open enucleation type modified Whipple , or perhaps a full Whipple surgery. By the time ether surgeon told me where the tumor was located I finally cried , because over my life time and reading on line about insulinoma since the moment the Dr told me she believed I had it ( I ask her to write it down ). I went in the hall way at Mayo, sat down and looked on my phone to find it and was shocked to see that I had all but one of the symptoms for 20 years I was 65 then. Fast forward, 2 modified Whipples , two procedures and 13 total visits to Mayo. I feel the best I have in 21 years. I did recently go back ( during covid twice March 2020 and surgery for hernia July 2020 ). I feel that its so important that I get care from Mayo if its anything involving my abdomen or thyroid. I felt completely safe and protected at Mayo, during covid was no different. In March 2020 I flew from Florida in July we drove for the first time ( flight was cancelled ). We both did get covid months later, My husband had a meeting with two other physicians he works with the night before we left Michigan for our Florida place, my husband was sick for 20 days ...myself 4 or 5 with miner symptoms lingering. So I never got sick until Nov, 4th this year. My husband has lymphoma so he was hit harder. I will go back to Mayo for breast exams and thyroid checks because the town we live in only has one endocrinologist who said she was so busy with patients waiting one year to see her, I should go back to Mayo. My second surgery was to stop a leak, Mayo did do two procedures to stop the leak to no avail. It took over 20 years to have symptoms and never did one physician suggest anything was wronged. D6 yrs before I was diagnosed I had surgery at our local hospital, they kept me over night ( went in through ER ) I didn’t eat was in bed and by the time they wheeled me down to surgery. I nurse ask me how I was feeling...I said, very bitchy and upset and dI dont know why”. She checked my sugar and said it was 33. That was the first time I realized that if I didn’t eat I had low sugar. So for years whenever I felt like that, I knew I needed to eat and eat I did. I grew and grew to gain 60 lbs. I lost a significant amount of weight following surgery, then gained back about half, no it is coming off again gradually. I am heavier than I can remember and I don’t have to eat or I can wait to eat when others are ready, its wonderful.

Good morning Preeti,
I have had 2 surgeries to remove a total of 11 insulinomas. Like you, i have at least one other insulinoma that is unable to be located and continue to deal with the hypoglycemia episode. I also wear a dexcom to assist with management. I completely understand your travel concerns and it certainly is a difficult decision to make. My best advice is to make the decision that is right for you - based on the frequency, severity and day-to-day impact of the episodes vs. the risk of exposure to COVID. While i cannot recommend a decision, I can tell you I have been to Mayo twice since March - May and October 2020 - Mayo does a great job of screening and requiring masks as well as safe distancing and i have not had any exposure issues. Due to my surgeries, I do not have a spleen so I am in the high risk category and felt safe with the processes Mayo and the Endocrinology clinic as well as Dr. Vella had in place. We live far enough away from MN we did choose air travel. We flew Delta and I felt comfortable with their precautions they had in place. I wish you the best in your decision as it is no doubt a difficult one. Please don't hesitate to reach out with additional questions or information I might could assist with.

Hello @preeti and welcome to Mayo Clinic Connect. I'm pleased that you found this patient support network. We are not medical professionals but patients, like yourself, who choose to share our medical experiences with others and offer support. I have personally had three surgeries for NETs. I do not have an insulinoma, my tumors were in the duodenal bulb. It is disconcerting, though, to have some rare form of cancer, no matter where it is located.

I'm sorry to hear of the unsuccessful attempt at locating the tumor. I'm sure your referral to Mayo will be a great help to you. Mayo has some amazing doctors and also amazing diagnostic tools for dealing with NETs.

I would like to invite @marilyn2525 to this discussion. She has had surgeries for this type of NET at Mayo. Perhaps she can lend some of her personal experiences to help you. I would also like to invite @amya and @ahtaylor to offer you some support.

The decision as to whether to travel during this time of COVID is one that only you can make. You have to weigh the benefits as well as the risks of waiting. Perhaps as a method of making this decision, you can ask your current doctor what he/she thinks about the risk of waiting at this time. Also, are your symptoms debilitating to a point that a resolution is important to you?

I look forward to hearing more about your decision-making process and how you are doing. Will you post again?

Hi All,
I have been diagnosed with Insulinoma and after unsuccessful attempt of locating the tumor with CT scan and Ultrasound Endoscopy, my Endo in NJ referred me to Mayo Rochester. I have an appointment scheduled for next month.

With Covid cases increasing rapidly, I am not feeling comfortable to travel during next month and at the same time, wouldn’t want to lose my appointment slot that I got 2 months back. For those who dealt with Insulinoma or still have it, do you think it’s important to take care of it asap? I am thinking to postpone the appointment towards March/April when hopefully the situation improves.

I am dealing with hypos for past year and a half. Dexcom is helping me to monitor sugar level so I was thinking to delay the Mayo visit for few months and avoid Covid exposure.

I’d really appreciate any advise you can provide. Thank you so much!

Big delay in answering your questions...I believe both surgeries were modified whipples. In my case the pancreas and spleen were not removed. In laymans terms, the first surgery was to remove the tumor in the head of the pancreas, the second surgery approx. 9 weeks later was to fix the pancreatic leak and if not possible remove 3/4 of the pancreas. I was blessed and my surgeon Shaun Cleary was able to suture my leak to the bottom of my stomach. Between the leak, two big surgeries, stress, and rapid weight loss I have loss a lot of hair. I'm guessing it will come back. I'm very fortunate I was accepted to Mayo. I truly feel that without that appointment, I would have died and no one would have ever know why. I live near a hospital, but we only now have two endocrinologist and I was never referred to one.

@marilyn2525

So glad to hear that you are doing so well, Marilyn!

Just wondering, did you have the Whipple procedure or something else?

<p>Without the expertise of the physicians at Mayo, I believe my difficult situation would have finished me. Dr Kapoor diagnosed me in minutes. I suffered for two decades, in just one visit to Dr. Kapoor my life was changed forever. Thank you to the fine Internist who sent me to her, the surgeon who removed my insulinoma, the Drs who worked at trying to stop the leak and last but not least Dr. Cleary who did a second surgery to stop the leak while saving my pancreas. God Bless you all and Mayo Clinic for giving me a far better life than I was living with that tumor. Gratefully yours, Marilyn A. Blum</p>

Thanks Teresa. Yes, my issues worsen if I'm tired or under stress. I'll keep you posted.

@sarcomasurvivor It sounds like you are off to a good start. You are asking good questions and really thinking this through. You said in your post that, "my symptoms fluctuate by time of day" and I'm just wondering if the symptoms are worse when you are tired? If so, this is a good point to bring to the attention of the doctors that you speak with.

I'm looking forward to hearing from you again as you continue to search for answers as well as help. Keep advocating for yourself. You are doing a great job!

I will post as I learn more, hopefully. I am waiting for a phone Consult from the Mayo neurologist I saw last month. Some question whether this is inherited spinocerebellar ataxia after seeing local movement disorder specialist and Mayo neuropthamalogist. However, as my symptoms fluctuate by time of day, I started to wonder if my system was being affected by hormones or other chemicals, especially in the morning.

I had a sigmoidoscopy and endoscopy a year and a half ago at Mayo with nothing found. I will ask the Mayo neurologist if an endocrinology referral Is in order. Thanks.