The Foundation Dedicated to Discovering a Cure for Neuroendocrine Cancer

Caring for Carcinoid Foundation

Things to Do/Know

Written by Carrie Host, carcinoid patient, survivor, author, and mother of three.

From the patients perspective the following things are helpful.

Try to remain calm and positive. It may be hard to do, but the alternative is no easier. It is such a blow to find out that you have cancer, but you will sort this out step by step.

Choose to find support with the people, or person you love and trust. If you have a single friend, you have a life jacket, if you have a whole group of family and friends, you have a lifeboat. Either way, you won’t sink. Hang in there.

Try to find a cancer support group that you can attend. It doesn’t need to be a “carcinoid/neuroendocrine group” as they are not easy to find. (We’re working on that with our listing of neuroendocrine tumor support groups.) Any professionally run cancer support group, will likely provide you comfort there in the company of those that attend the meeting. It is helpful to sit with folks that can look you in the eye, and know that you are afraid, and have that be alright.

Try not to panic. This will not serve you well. Take three slow, deep breaths and forge ahead.

You are strong. You will be amazed at how strong you will become.

Remember that it is okay to be hopeful while exploring your choices.

Wisely choose your source of information and that which you accept as true. That is the nice way of saying, don’t let a person say negative things to you such as, “I’ve heard of a guy that died, recently with that kind of cancer.” These kinds of statements are too general and each individuals diagnosis is unique. There is no way that someone should assume that they are in a position to “tell you how it is.” That is why you are here on our website. You are looking for support and going to seek the direction of an oncologist. Put on your “selective hearing” and don’t buy into terrifying stories.

Remember to be easy on yourself. Try not to judge this whole situation. Focus on what you love about your life the way it is right now. As Dr. Andrew Weil suggests…buy yourself some flowers or a special treat.

What do you think newly diagnosed patients should do/know? We welcome your suggestions; please e-mail them to

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