Patient Stories - Add Your Story
"Carcinoid or to give it its medical name 'neuroendocrine tumor (NET) is all too often misdiagnosed by GPs. This was true in my case and my GP said that my 'flushing' was probably male-menopause! He was sadly misinformed and wrong!
However, the good news is that NETS are not always terminal.
Oh NETS are a chronic condition and I am past a cure (no surgeons in SA are willing to rid my liver of the metastasis.) But the Interferon and Sandostatin LAR are holding the growth in check. So I lead a very normal and active life.
As a GVI patient of some 8 years now, it is my belief that some GVI oncologists are not as aggressive when it comes to NETS as their partners. I therefore see it as my role as a NET survivor to assist in educating my oncologists in NETs. [e.g. "Mayo clinic autopsy report of 40,000 cases 1 out of every 150 patients." Had carcinoids!]
So if anyone wants a patient perspective on NETs and treatments for this chronic condition I am more than happy to share what I have gathered over the years. Most informative site - www.carcinoid.org
Thank you
Bill"
submitted by Bill
However, the good news is that NETS are not always terminal.
Oh NETS are a chronic condition and I am past a cure (no surgeons in SA are willing to rid my liver of the metastasis.) But the Interferon and Sandostatin LAR are holding the growth in check. So I lead a very normal and active life.
As a GVI patient of some 8 years now, it is my belief that some GVI oncologists are not as aggressive when it comes to NETS as their partners. I therefore see it as my role as a NET survivor to assist in educating my oncologists in NETs. [e.g. "Mayo clinic autopsy report of 40,000 cases 1 out of every 150 patients." Had carcinoids!]
So if anyone wants a patient perspective on NETs and treatments for this chronic condition I am more than happy to share what I have gathered over the years. Most informative site - www.carcinoid.org
Thank you
Bill"
submitted by Bill