Where Can I Turn for Help
The best place for medical information is the website of the Carcinoid Cancer Foundation of White Plains, NY at www.carcinoid.org.
The other good place to turn is a well run local support group. Most, like our NJ group, is not a pity party. We are not much for warm fuzzies. We will tell you what we did about it. Accuracy of information is paramount and we strive to make sure anything offered is backed up with evidence.
We have a number of success stories. People who firmly believe they would not be alive today if not for the information provided by our group. People who walked into a room full of people who have walked a similar path and then realize, “Hey, they did it, so can I”.
What will you see at a meeting? Just a bunch of normal looking people. In ten years of holding meetings and conferences, we have yet to see an IV pole or colostomy bag (we actually had a doctor try to talk a patient out of going for fear of what she would see). Carcinoid has been called the “good looking cancer”…”you look too good to be sick”, not everyone thinks you really have cancer. It is hard to tell the patients from the caregivers at a meeting.
What will you take away from our meetings? We have a lot of printed materials that we try to provide. You will also take as much knowledge as you ask for. Lastly, you will walk away knowing that you have just made a whole bunch of new friends for this part of your life.
Our meeting dates and locations are posted on our website here.