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spartan (@spartan)

Newly diagnosed with NET in liver

Neuroendocrine Tumors (NETs) | Last Active: Jul 7, 2019 | Replies (8)

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Hello @spartan, I'm glad that you found our discussion group on NETs. When I was first diagnosed in 2003, there was little information and almost no support. All I knew was that I had something "rare." To date, I've had three surgeries for carcinoids in the duodenal bulb. I see that member, @tomewilson has also provided you with some information. I'd also like to direct you to the Carcinoid Foundation website where you can learn more about doctors, support groups, etc. https://www.carcinoid.org/. On their website, you can sign up to receive email newsletters that will keep you informed about the latest research and treatment for NETs.

If you are comfortable doing so, please share a little about how your doctors arrived at this diagnosis. For example;

What kind of symptoms did you have that led your doctor to run tests?
What tests were run to determine that you had NETs? Did it include the 68Ga DOTATATE Positron Emission Tomography (PET) that specifically looks for NETs?
Do you have other health problems as well as the NET?
How are you feeling now?

I look forward to hearing from you. I've found that the more support I have for NETs the better I feel. As one of our Connect Mentors says,

"We are better together."

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Replies to "Hello @spartan, I'm glad that you found our discussion group on NETs. When I was first..."

Thank you Teresa for the link to the Carcinoid Foundation. My symptoms were: blood in urine and my primary was watching my liver the last few years. I had PET on the liver which showed three spots. Needle biopsy done on the largest of the spots. Other health problems: cardiac (valve since birth and defibrilator a few years ago) and diabetes. My mother died of glioblastoma at a young age so I am curious whether NET tests positive for a genetic propensity for cancer. I have clinical depression diagnosed 10 years ago…lots of health issues already so the support of this discussion group is really helpful as I journey through this. Thank you for the encouragement!