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Did anyone else have a long struggle to getting a NETs diagnosis?
Neuroendocrine Tumors (NETs) | Last Active: Jan 18 1:36pm | Replies (15)Comment receiving replies
Hello @denisehatten66 and welcome to the NETs support group on Mayo Connect. So many members of the NETs group were diagnosed "incidentally." This means our medical team was looking for or testing for something else when the NET was discovered. In my case, I was having an EGD to check for ulcers as well as GERD. In my case, a lesion was found, and a biopsy confirmed the NET.
There are many tests used to diagnose NETs (or follow up on) a NET diagnosis. These tests are included in this article from the Carcinoid Cancer Foundation website. Here is the link. I'd encourage you to review the test lists.
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
How are you feeling? Any problems with digestion, weight loss?
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@hopeful33250 I was diagnosed through a bone scan. They first saw a nodule about 5 years ago, then this past year (2025) I had another bone scan done and it was found that the tumor had grown. Mine was still small. Some Dr.s go on to do a biopsy and decide the following steps, others will say it is best to wait. I ended up having surgery. I had no idea something was wrong, other than being more tired and a bit out of breath. The work I do is very physical, so I chalked it up to getting older. It is best to find a doctor who is a Nets specialist.