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Neuroendocrine Tumors (NETs) | Last Active: 15 hours ago | Replies (411)Comment receiving replies
Just been diagnosed with neuroendocrine tumor of the pancreas! Will be having a PET scan soon with possible surgery within weeks. Shocked! Describes how I feel. The tumor is on the tail of the pancreas and is 1.7 cm and slow growing. Wait and see was an option, but I am scared of it spreading.
Hope surgery is the right choice.
Replies to "Just been diagnosed with neuroendocrine tumor of the pancreas! Will be having a PET scan soon..."
Hello @suzyis7 and welcome to the NETs discussion group at Mayo Connect. As I've had three surgeries for NETs in the upper digestive tract, I really understand the shock that you are feeling. I never had any symptoms, so the surprise at having a rare form of cancer was hard to imagine. Typically, NETs are slow growing as you indicated.
I would encourage you to learn as much as you can about NETs. The Carcinoid Cancer Foundation (CCF) has some great patient information as well as videos from experts in the field. Here is their website, https://www.carcinoid.org/for-patients/. The more you understand about any disorder, the better prepared you will feel to deal with it.
Were you having symptoms that led to this diagnosis? Is your PET scan coming up soon?
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I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after living with it for 10 years. For me my quality of life greatly improved after surgery but mine was functioning and made me very sick. Three surgeons recommended leaving it in (watching it). At the time of my surgery I had two new leasions on my liver and had them removed as well. Three years after the surgery I have new spot on my liver. I wish I had the surgery when I was first diagnosed but decisions are easier to make looking backwards and I had a lot of improvement after the surgery.