Poorly differentiated High Grade Neuroendocrine Cancer vs other

Posted by coolwino @coolwino, Sat, Oct 19 10:55am

I am fairly new to this group. My husband is was diagnosed with poorly differentiated High Grade Neuroendocrine Carcinoma Ki67> 90% in 9/16. As I find myself reviewing various groups like this, I find it hard to distinguish what might apply to my husband and what does not. For those new to the Neuroendocrine battle, there are two "kinds" of Neuroendocrine Neoplasms (See attached chart – as if this cancer stuff is not confusing enough!) – well differentiated, slow miotic rate (how fast the cells are dividing) measured by Ki67 < 20 are usually referred to as "NET". Poorly differentiated, high grade (aggressive) miotic rate (Ki67>20%) is referred to as NEC. The symptoms and treatment options for NET and NEC seem to be very different. It would be helpful if participants of this group would identify which kind of Neuroendocrine battle they are fighting when they do a post. Perhaps you can note whether you are poorly or well differentiated and what your Ki67 percentage is. Just a thought. Also, I've recently found a Facebook site specifically for people with High Grade Neuroendocrine Cancinoma. https://www.facebook.com/groups/1920986924817967/ for those of us dealing with the REALLY rare NEC.

Chart attached

Grades of Neuroendocrine Neoplasms

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This is a reasonable suggestion.

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In reply to @coolwino "Chart attached" + (show)
@coolwino

Chart attached

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I was diagnosed with neuroendocrine carcinoid in 2002. In all of the years since I have had CT scans and a few MRI's, but NEVER a PET scan, Ki67, octreoscan or any of the usual diagnostic scans. Anyone have a clue as to why??

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