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Scared - Suspected NET on tail of the pancreas
Neuroendocrine Tumors (NETs) | Last Active: Mar 13, 2023 | Replies (47)Comment receiving replies
I had NET on the head of my pancreas so the surgery is different from yours. I saw four surgeons over 6 years, the first three recommended leaving it in and watching it. Over the six years my primary NET really didn't grow much, but it spread to my liver so in the end I needed surgery on my liver and pancreas. My NET was functioning and made me very sick for 10 years. My quality of life improved greatly after surgery. I was told my surgery was very complicated, even with a slow recovery I was back at work after 6months (I do have a desk job, so not physically demanding). I wish I had the surgery earlier. Wishing you all the best, hopefully you will find the answers you need to feel comfortable with your decision.
Replies to "I had NET on the head of my pancreas so the surgery is different from yours...."
Sorry, my comment was meant for OP!
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My husband is in almost the same exact situation. He does not have obvious carcinoid signs and the
tumor was found accidentally. The EUS was inconclusive. They got 3 samples but they are trying to aspirate cells and couldn’t get enough. So suspected neuroendocrine is the diagnosis. We saw a local oncologist who wanted to rush him into surgery but we felt we needed to look at other options, since these are rare. So we went to a university center that specializes in Neuroendocrine tumors and, long story short, the cure is surgery. We are sad that he has to go through this, as he has elected open surgery, but feel it will be less stressful than watching it, overall. My advice to you: get a PET scan with 68 dototate dye so you know that there a no more tumors. Robotic surgery could be an option and less invasive, if you don’t have other tumors. Find a center of excellence and doctors you trust with your care. Please take care.