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What topics do you want for the Neuroendocrine Support Group?

Neuroendocrine Tumors (NETs) | Last Active: Feb 8, 2023 | Replies (45)
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@collielady

I joined the NET support group because my father had an intestinal carcinoid tumor; my half sister had NETS removed from her lung and another paternal relative had a Merkel Cell Carcinoma. I worry that NETs could show up in myself or other family members. And wonder if there are tests that could be done to discover something sooner rather than later.

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Replies to "I joined the NET support group because my father had an intestinal carcinoid tumor; my half..."
Teresa, Volunteer Mentor | @hopeful33250 | Oct 7, 2019

Hello @collielady

I would encourage you to check with the NIH in Bethesda, Maryland. They have been doing research studies on families with NETs. Here is their website for clinical trials,
https://www.nih.gov/health-information/nih-clinical-research-trials-you
Also, have you had any genetic testing for yourself? If not, you may want to discuss this with your endocrinologist. I personally believe that all of us with NETs need to have an endocrinologist on our medical team. They have invaluable insight and knowledge into the workings of the body. I think of them as the IT professionals of the body system.

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