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Diagnosed with NET si-NET Stage 1 Grade 1
Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (27)Comment receiving replies
A year ago I had a similar event except my 6.9cm tumor was in my left lung and atypical. I had my upper lung removed and the tumor had not spread so I understood it at the time that this was the cure. However 6 months later after my first CT scan which was clear, my cardiothoracic surgeon mentioned that the cancer could come back since it was atypical. Ever since then I have been depressed and just “waiting to die”. No one explained neuroendocrine tumor to me and I’ve done a lot of research since then. I have an appt with an oncologist later this month to try to learn more and if I should go to a bigger city to see a specialist. I will be watching your feed for comments.
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I understand how you feel ! I’ve done a lot of research , well mostly google and I’ve gotten a lot of answers but google isn’t case specific and doesn’t take into account your personal NET . I am being monitored now as I stated by an oncologist. With the monitoring I feel good that if there is a reoccurrence it will be caught early and surgically removed again. Mine was a small intestine Carcinoid of the ileum. It was very small.5mm and it was “Typical” carcinoid or NET , not “Atypical. My ki-67 was < 1% so everything about it was good except for the obvious fact that it was a tumor . Reoccurance is low but can happen. I felt better after all this but as I still learn more it just brings up more questions and since I still don’t know all the answers it brings up the fear and depression . I have OCD and anxiety so in my mind I must have all the answers. Plus It’s my health ! Can I ask your age ? I’m 54.