Hello @terrycooper and welcome to the NETs support group on Mayo Connect. It looks like the NETs in the colon are a new diagnosis for you. Is that correct? Most of us with NETs had no symptoms before the diagnosis of NETs. Is that true for your as well?

Mine were found during a routine upper endoscopy. Since 2003, I've had three surgeries. NETs are a rare cancer and don't always fit the jargon or path of other types of cancer. All three of my surgeries were in the same area of the upper digestive tract. As of now, there does not seem to be any metastasis to other organs.

If you've read or researched about NETs you probably already know that they are often slow-growing and people live with them for years, even when there is a metastasis. Has it been suggested that you have a scan to look for metastasis? Other than the CgA levels, what other types of tests have been done?

Here is a list of possible tests (from the Carcinoid Cancer Foundation website) that can be used for the diagnosis and follow-up for NETs patients, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/

Will you be seeing a surgeon in the near future?

Thank You!

It was found during an endoscopy on November 22, 2023. Within 5 days they had me lined up to see a Hematologist Oncologist right away and a Surgical Oncologist. Along with my Gastro Dr sitting in.

Pet Scan, CT Scan and a Chest Xray to take place next week.

Blood work indicates CGA is high.

I have been sick about a year...I have been misdiagnosed with Long Covid.

Hopefully, it's contained like yours.

Thanks so much for the information.