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Posts (4)

Tue, Mar 3 4:31pm · Neuroendocrine Cancer Support Group Meeting FL in Neuroendocrine Tumors (NETs)

What is the topic for this week's Neuroendocrine Support Group meeting?

Oct 19, 2019 · Poorly differentiated High Grade Neuroendocrine Cancer vs other in Neuroendocrine Tumors (NETs)

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.

Oct 6, 2019 · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)

I would like to learn about various ways to deal with pain. There seem to be several medications you can take with varying side effects. Some, like constipation, make the pain even worse. What other options are there? We have tried CBD, Essential Oils and that has not helped. Can we talk about pain pumps and how they work? Appreciate your putting on these support group meetings. I wish I had known about this when we started our journey at Mayo in 2016!! How come no one told us about Mayo Connect and the support group????