1. < Neuroendocrine Tumors (NETs)
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What's next after SiNETS?

Posted by carver1164 @carver1164, Jul 14, 2025

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.

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jlsgt | @jlsgt | Jul 19, 2025
In reply to @gustavo1975 "Hello, how are you? Clearly, but a healthy person could also have some type of tumor..." + (show)
Profile picture for gustavo1975 @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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allimcd3 | @allimcd3 | Jul 21 7:08am
In reply to @gustavo1975 "Hello, how are you? Clearly, but a healthy person could also have some type of tumor..." + (show)
Profile picture for gustavo1975 @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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@gustavo1975 so, remain positive and hope all goes well? I just finally found out yesterday what my ki-67 is and talk to the specialist tomorrow and the note from him yesterday seemed very minimal compared to what I've read, but maybe he's thinking along the lines of what you're saying. I'm revising my list of questions with my new information in mind. I'm asking myself, does just another MRI in October seem like the common plan for stage 4 grade 2 SINET only showing on one place, the terminal ileum? All my secondary masses were removed 9 1/2 weeks ago and they were all abdominal and why I know that NET is there, so I'm grateful, but not eager to grow more or, God forbid, have it spread to other NET organs. Not sure how common any of that is, or if there's enough known yet to predict very accurately. Finding out it was in only one place, my first thought was surgery, but he's not thinking the same so I find out tomorrow what he is thinking. Will pray about this as I try to revise my questions. I need a good relationship with this man and I can't travel any farther. I don't drive anymore and have been relying on my grown kids to drive me over two hours to the closest Mayo.

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