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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Neuroendocrine Tumors (NETs) | Last Active: Oct 31 7:28pm | Replies (113)
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@hopeful33250

Hello @gsm13161,

I see that you mentioned genetic testing and said that, "it can assist future treatment decisions." Is genetic testing something that you have done?

As I have not heard about genetic testing being used for the treatment of NETs, I would be interested in knowing if the testing helped determine the treatment that you are now having. Please share as you are comfortable doing so.

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Replies to "Hello @gsm13161, I see that you mentioned genetic testing and said that, "it can assist future..."
coachv | @coachv | Jul 1, 2023

Teresa,
I have Carotid Paraganglioma and genetic testing was strongly recommended. Turns out I have an SDHB mutation. SDHB mutation, unlike other SDH mutations can be passed my mother and father. Not just father. We will be testing our boys as soon as we figure out how it is best to explain to them that there is a 50/50 chance I may have passed a 'cancer gene' on to them.

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