As a rare disease that’s commonly misdiagnosed, Carcinoid Syndrome has remained underrepresented online and in the cancer community. In 2016, a survey was conducted.* Over the course of the year, over 500 people being treated for Carcinoid Syndrome, caregivers, 150 oncologists, and 7 leading national and regional carcinoid support groups were asked to participate in the largest survey about Carcinoid Syndrome in the US, to date.
The goal was to understand how Carcinoid Syndrome affects the lives of those who suffer from it and help spread awareness about the disease.
of patients reported not feeling well has become "normal"
of patients alter their schedules due to Carcinoid Syndrome
of patients living with Carcinoid Syndrome report it as a daily challenge
reported living with Carcinoid Syndrome is stressful
of patients experience symptoms at least once a month, despite receiving treatment
of patients experience symptoms for over half of the month, despite receiving treatment
Most oncologists believe symptoms affect their patients up to 1 week each month
But most patients report having symptoms at least 3 weeks each month
of patients with diarrhea agree that reducing it by even 1 episode per day would be meaningful
of oncologists are confident they can help patients manage their Carcinoid Syndrome symptoms when they’re made aware
of oncologists reported that they would be open to adjusting a patient’s treatment because of bothersome carcinoid symptoms, if asked
of oncologists believe patients have questions about their Carcinoid Syndrome that they have not yet asked