@bijou17

I'm new to neuroendocrine tumors (NET). I haven't had surgery to remove the NET although surgery has been recommended. My primary site is in my ileum with a couple of metastatic lymph nodes that lit up during a Dotatate scan which they say confirms that the cancer has spread locally to the regional lymph system.

I don't think I'm symptomatic although a NET specialist says I have carcinoid syndrome based on my high serotonin and chromogranin A (CgA) levels and some other symptoms which I said were not a big problem.
https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/symptoms-causes/syc-20351039
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Surgery was recommended so I won't have a bigger problem with a small bowel obstruction in the future. I'm just trying to figure things out but I know that I don't want the surgery that the NET surgeon discussed with me. The CT-scan with contrast was so the surgeon could get a better idea about the size of my NET but it didn't show anything according to the report.
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If you are asking about Cushings syndrome and cortisol levels that might indicate another problem with your hormones. I'm suddenly more interested in hormone levels. I have several hormone imbalances because of being on prednisone for many years for an autoimmune condition.

The NET they found was an incidental finding but I have been seen by an endocrinologist for several years. I'm wondering if a NET might be related to long term Prednisone use and being immunosuppressed for my chronic inflammatory autoimmune condition.

If it isn't one thing it is another and it seems like it never ends.