What's next after SiNETS?

That's right. I've had more than one surgeon tell me there is no cure for NETs. My current Oncologist even said that he does not use terms like "cured" "clear" or "cancer free". Remember, there are millions of these type cells in the body.

Exactly. However, if you join the monthly meeting this group has, you will meet many who are living with NETs for decades. It is a different way of thinking than many other cancers where the goal is cure or remission.

I believe cancer is never really gone. It always co.es back, regardless

Good afternoon, given that statement, what would be the difference between a healthy person and someone who has had a tumor removed, and all the tests and analyses are normal? Like healthy people?

NETS cancer is usually very small, slow growing & no bigger than an ink pen head (dot) & hard to see without magnification. It’s often already spread through the endocrine cells by the time it’s found, which is why active testing is so important.

Good day,
Yes, I think this is my case.
Mine is 9mm and mean.
I am riddled with symptoms from it. I also have liver pain. CT shows a focal mass which they deemed likely benign. But I feel like its going to prove more than that. I get confused by radiologist reports. I have a mass in my liver and kidney. "Likely" benign. I also have 3 nodules on my lung which they thi k are also nothing. Lots of calcifications in every organ. Mostly small bowel and pancreas. Its a bit worrisome

Please ask your oncologist ( you will need one who specializes in NETs) about Galium-68 Dotatate PET/CT scan , which is a specialized scan to detect NETs.

Thank you...I've had one already..it was negative. Tumors too small to see. Entero ct was done and found it. My surgeon is a gi surgical oncology. Head of surgery at Mount Sinai in Toronto. Just waiting g for her call. Its been almost 3 weeks now

The difference would be that a person with NETs has cancer cells diving or trying to divide in their body. Can a person live a LONG time with Nets? Absolutely. I've had it a long time myself. I suspect more than 10 years as I was misdiagnosed for many years as having AVM issues. What I have though, is a NETs mass in my mesentery.

On PET scans: Having a clear PET scan simply means only that. It does not mean you are cancer free. I've had many of these now with Gallium and Copper isotopes. I continue to be a student of having cancer and how PET, Cat scans work and detect cancer. It's an interesting technology.

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?