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High grade 2 and 3 neuroendocrine

Neuroendocrine Tumors (NETs) | Last Active: Apr 15, 2023 | Replies (27)
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@sgt147

I was just diagnosed with Neuroendocrine tumor located next to my vocal cord which I am told is very rare. My first visit it was an assumption that is what it maybe and a biopsy confirmed it. It is about the size of a walnut. I know it is slow growing but do not know if it is producing hormones which could later affect me in different ways. I am 63 years old and just want it out of me however the risk is damaging vocal cords. I guess what I am asking it should I have the surgery and take it out now while healthy rather waiting 3 or more years to see if still growing and could spread.

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Replies to "I was just diagnosed with Neuroendocrine tumor located next to my vocal cord which I am..."
Teresa, Volunteer Mentor | @hopeful33250 | Apr 13, 2023

Hello @sgt147 and welcome to the NETs discussion group on Mayo Clinic Connect. Yes, I'm sure that a NET next to the vocal cord is very rare. You are asking very good questions about whether or not to have surgery now or wait.

Has your medical team suggested that you have a 68 Gallium Dotatate PET to determine if there are any other NETs in other locations? Here is some information about this specialized test to locate other NETs.
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
This test is usually available at research-oriented and/or cancer centers but probably not available at smaller hospital systems.

If you are comfortable sharing more, what type of symptoms were you having that led to the discovery of this NET?

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