I Have What ???
If you are reading this, it is probably because you, or someone you know and love, had been told they have Carcinoid Cancer or another Neuroendocrine Tumor (NET).
First of all, take a deep breath. It is not as bad as you might think. Our purpose here is to provide some information about what you may expect. Knowledge truly is power. It gives you the power to help guide your own destiny, the power to reduce the fear, the power to have confidence in your choices.
Others have taken a similar path, and we can learn from their experiences. The late Sue Weiveris once described it best. Picture this, it was Valentine’s Day. After three years of aggressively trying to find a reason for her abdominal pain, she got the telephone call. She called it” two words: one I had never heard, and one I had never wanted to hear.”
Well, take heart. That telephone call was 1999, and a lot has changed since then. The term Carcinoid, and other Neuroendocrine Tumors (NETs) are far better known now. There is more information available and there is help. At the time of that call, there was one patient information or support group in the US. Now there are dozens.
The information in these pages is not intended to serve as a substitute for medical advice by your medical team. We are not doctors, but we have a vast collective amount of knowledge and experience which we are willing to share.
Sadly most doctors know very little about Carcinoid/NETs. Sue’s personal doctor missed her diagnosis for over 15 years from what was a subtle clue (histamine release). He later said that in medical school they gave a 20 minute lecture about it, preceded with “these are so rare, you will probably never see one in your lifetime, but pay attention because there is one question on the test”.
You are not alone. We, and other like us, are here to help.
The information here has been broken out into sections to make it easier to find what might interest you.
What is carcinoid/NETs
What tests can determine that I have that
Where do I go for treatment
What treatments are available
Where can I turn for help
Tips & Tricks