What's next after SiNETS?

Posted by carver1164 @carver1164, Jul 14 12:01pm

After 2 years of searching. CT scans, PET scans, all negative. Finally , the very last test, I would have been cleared. After a enteroscopy CT of my small intestine, there it was. 9mm NETS. I've been waiting for an oncology surgeon to call, but no call yet.
What's next? Surgery?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

@gustavo1975

Hello, how are you? Clearly, but a healthy person could also have some type of tumor they don't know about. A person who has had a NET removed, without lymph node involvement or metastasis, may or may not experience a recurrence. As long as all the test results are positive, if the patient isn't receiving other treatment, they are treated as a healthy person; nothing more than follow-up tests are performed.

Because if we think we might have something, but the equipment doesn't detect it, that would happen to everyone who is good at routine studies. Do you understand what I'm trying to say?

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I think I understand what you are saying. I simply don't believe a person that has had a NETs tumor removed is ever truly cancer free. It's that simple. Might live to be a hundred, but there are Neuroendocrine cancer cells there still. Millions of cancer cells in the body and I don't believe a surgery can get em all. I have a monthly Lanreotide injection and PET scan every six months because of it.

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