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NET - Insulinoma
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.
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Hello, I've been through diagnoses and removal of an insulinoma tumor at Mayo Rochester....I live in Michigan. Just to be diagnosed was amazing when I had lived with symptoms for a good 15 years. I went to Mayo for a thyroid biopsy and to discuss my weight gain of five pounds a year. Once I talked to a metabolic specialist....she called me back regarding symptoms and told me they believe I have an insulinoma. My symptoms were "classic". I'm making my seventh trip to Mayo tomorrow. I can report that I'm now doing very well...second surgery was Nov. 26, 2018. I believe the physician who diagnosed me saved my life. I have great confidence in their surgeons as well, the team and nursing staff are great.
Six months since my first visit that changed my life.
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2 ReactionsYes, I will fly back to Mayo Jan. 8 for a few days. Stent removal in bile duct, CT Scan & follow up with surgeon.
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1 ReactionIt is so good to hear from you, @marilyn2525. You have certainly been through a great deal, but I'm so glad that the previous problems are resolved and you are feeling better now. I'm sure you must be grateful for the help you got at Mayo.
Are there anymore follow-ups planned in the future?
I'm post second surgery at Mayo in Rochester. First one removed insulinoma from the head of my pancreas Sept 14, 2018, nine day stay. Was home in Michigan for 6 days and felt infection might be brewing possibly from drain site. Local hospital tried to put a new drain in where the first one had been ( was taken out at Mayo before I left) this reentry was difficult for them and they punctured my bile duct. I was there nine days with both a pancreatic leak and the bile duct was stented. I was able to fly back to Mayo, where they tried to stent / stop the pancreatic leak. Two procedures and two more trips to Mayo later, I made the decision to go for surgery again. On Nov 26, 2018 a different surgeon did an amazing surgery on me. He was able to save the pancreas ( I signed off to have possible 3/4 of it removed ). Once he got in, he found he was able to sew / attach the leak area to the bottom of my stomach. I'm post op four weeks and resting in Florida our primary home is in northern Michigan. We will fly once again to Mayo on Jan 8th to have that stent in the bile duct removed and a CT scan then meet with the surgeon. I am feeling better everyday. Some ups and fewer downs.
Mayo diagnosed me in about 40 mins. Then I went back for 72 hour test to prove it. I flunked the 72 hours test at noon the first day. I suffered with what I now understand was hypos....I called a real bad one an episode. I had three different Internist in 20 years, my husband is an MD. Had I not gone by myself of to Mayo. I would have died one day and never been diagnosed with insulinoma.
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3 ReactionsNo. They started with CT, didn't find. Endoscopic ultrasound found it. If it didn't they were going to do a calcium stimulation test.
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1 ReactionThis all sounds good, @amya. I'm sure you will be relieved to have this over. The laparoscopic sounds interesting. I wasn't aware that type of surgery could be done that way.
By the way, was the Gallium 68 Pet scan used to diagnose your insulinoma?
It is a relief. I'm a bit hung up the logistics of the financials, but the tumor must come out. I'll deal the the financials as I have to. I'll be in the hospital for about 5 nights they predict. Will depend if they can do it laproscopic or have to convert to open. I hope you are feeling well.
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1 ReactionI am so glad to hear that you have a confirmed diagnosis and a treatment plan in place, @amya. That is a relief, isn't it? I will certainly pray and send good thoughts your way on 11/27.
While I have not been diagnosed with insulinoma I have had 3 surgeries for NETs in the duodenal bulb and the 2nd surgery included the removal of the gallbladder. That procedure seems to be common with NETs patients, but I'm not sure of the reason for that.
Do you know how long you will be hospitalized after surgery?
Mayo was able to confirm diagnosis of insulinoma and find it with endoscopic ultrasound. Everyone was wonderful. Kind, compassionate and knowledgeable. I am scheduled for surgical removal on 11/27. I am confident in the care I will receive. My worries now are centered around insurance coverage. Working with them to try to get the needed documentation. Sounds like they will approve the insulinoma removal at reasonable and customary. I will need to cover costs above this. I was advised to have my gall bladder removed. I may have to do this in a separate surgery at home.
Hello @nancymcegg
I was just thinking about your last post or Oct. 3 and I hope you are feeling better. I was also wondering if you have any answers regarding the possible insulinoma diagnosis.
Have you gotten another opinion at Mayo or another facility yet?