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Pancreatic neuroendocrine insulinoma
Neuroendocrine Tumors (NETs) | Last Active: Sep 20 5:34am | Replies (73)Comment receiving replies
If it has spread the treatment listed to the only option. If it is a single insulinoma surgery is the best option. With time the symptoms will get worst and can cause black outs and coma if not managed. I have to eat carbs every 2 to 4 hours around the clock to stay alive. My surgery is in a week to remove it. There is a support group on Facebook just for insulinomas patients and is full of information. They have three groups one for suspected, one for diagnosed and one for multiple or metastatic
Replies to "If it has spread the treatment listed to the only option. If it is a single..."
I have the same situation as you from low blood sugar. I tried to find other options beside surgery. Now I also eat carbs every 2 -4 hours to keep myself alive. That also makes me gain a lot of weight. My tumor is on the head of pancreas 1.1 cm. It doesn't grow at all these 2 years .... I diagnosed in 2022 August
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Hello @margiefein and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum, it is a great place to receive encouragement and support.
You wrote the "If it has spread..." and I'm wondering if you have had a previous diagnosis of a NET in another location or if this is your first NET diagnosis? I would like to invite @ahtaylor to this discussion since she also has a history with insulinoma and many different treatments, including surgery.
From what you say, it sounds as if your blood glucose is affected by this condition. How long ago was this condition diagnosed?