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What do I need to know about NETS?
Neuroendocrine Tumors (NETs) | Last Active: Sep 11, 2023 | Replies (43)Comment receiving replies
thank you, the film was very, informative! my name is Debbie and i was dx in 2019 for a neuroendocrine tumor. i have a EUs and CT scan done every year. the tumor is on the tail of my pancreas. I'm a little confused about how this tumor is growing. my doctors tell me it is slow growing. it has gone from 7mm in 2017 they couldn't find my records to compare the sizes. i had another eus and ct scan in o1/24/22 the pancreas tumor was 1.2x0.9 the doctor said it was 1.1 in 01/2021 in 2022 it was 8.5 mm also he said there was a 10mm homogeneous round nodule off the tail the pancreas consistent with accessory spleen. in 09/2022 he said there were unchanged findings of a 7mm march 16 2023 the doctor said it had not changed it was 11 mm i dont know what to think. i have a history of breast cancer and skin cancers. thank you
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Hello @deb1955 and welcome to the NETs discussion on Mayo Clinic Connect. I am glad that you found the video helpful. Are you having symptoms of Carcinoid Syndrome now?
I can certainly understand your confusion about the information you are getting. Understanding cancer is difficult enough, but when you are dealing with a rare cancer, like NETs, it becomes even more difficult.
While I've had three surgeries for NETs, mine have not been in the pancreas, but we do have several members who may be able to share their experiences with you. They would include @kim1965 (his wife recently had surgery for NETs and he is most helpful in responding to others about her experience), also @rockchick, @smt, @outlawcancer, and @ahtaylor.
What type of scans and other diagnostic tests have you had for NETs? Have you had any treatments yet, such as surgery, monthly injections, PRRT, etc.?