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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
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.
Replies to "I understand how you feel ! I’ve done a lot of research , well mostly google..."
I am a grade 1, stage 4 and know exactly how you both feel. It’s the hardest thing not having answers. I will be having tests in April to see if the prrt treatments have helped. Until then there is a lot of anxiety about the answers. I chose to find activity that gives me creative ways to improve myself and that has helped me with any depression. When I have a bad day I take time alone to give myself space and rest. I live moment by moment trying to be grateful for all I have in my life. It helps me stay rooted and positive.
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I’m 68 yr old woman. I had a lot of tests done before surgery and they all turned out good. Biopsies, blood work, echocardiogram, endoscopy, pulmonary tests, CT scans, brain MRI and PET SCANS. There was only the one tumor in my lung and it hadn’t spread anywhere else. I was originally scheduled to have my entire lung removed but the surgeon was able to get the whole tumor with just my upper left lobe removed. I read my charts online and there is no mention of what stage or grade it was, or any other numbers, just that it was atypical. I went to see an oncologist after surgery and he said there is no chemo that works on this cancer and he felt I didn’t need any other meds.