Neuroendocrine Cancer Awareness Network Releases Data from New Survey of Neuroendocrine Cancer Patients

98 Percent of Patients Want More Information and Resources

92 Percent of patients are actively seeking out information about NETs and learning about available treatment options

Nov 10, 2015, 11:28 ET from Neuroendocrine Cancer Awareness Network (NCAN)

BELLMORE, N.Y., Nov. 10, 2015 /PRNewswire/ -- Results from a new survey announced today by the Neuroendocrine Cancer Awareness Network (NCAN) find that 98 percent of patients living with neuroendocrine tumors (NETs) wish there was more information and resources available about their disease. NET patients are members of an active and informed community, with 92 percent of those surveyed actively seeking out information about NETs and learning about available treatment options.

The survey, conducted in a collaboration between the Neuroendocrine Cancer Awareness Network (NCAN) and Ipsen Biopharmaceuticals, Inc., found that while 74 percent of NET patients think their treatment doctors are able to provide them with the most up to date information, 50 percent of patients acknowledge that they prefer to consult online resources first when they have questions about their NETs.

The survey was designed to identify the needs of the NET patient community and their current level of satisfaction with their treatments, as well as to gauge the level of patients' communication with their doctors. NETs are a rare form of cancer that affects approximately 5 out of every 100,000 people in the U.S. The rarity of neuroendocrine tumors makes them difficult to diagnose and also means there is less information available about the disease. On average, respondents experienced symptoms for 4 years before receiving a diagnosis of NETs.

In an effort to address the need for more information about this rare disease, Ipsen launched, an online resource that provides tools, guides and information about NETs.

"As a patient myself, I understand how important it is for patients, especially those who are newly diagnosed, to find resources about neuroendocrine tumors," said Maryann Wahmann, Founder and President of NCAN. "By the time I speak with many patients, they are already very discouraged and frustrated because relatively few healthcare providers are aware of their disease. Moreover, they don't know where to turn for reliable information and support."

NETs usually present with vague abdominal symptoms, thereby increasing the difficulty to diagnose them. Although this disease is diagnosed in a small population, affecting approximately 112,000 in the U.S., these patients still require reliable resources.

"It is so important to understand a disease or condition from a patient's perspective. We were happy to sponsor NCAN to conduct this survey to gain a better understanding of the patient experience and the needs of those living with neuroendocrine tumors," said Cynthia Schwalm, President and CEO of Ipsen Biopharmaceuticals, Inc. "In addition to information provided by advocacy groups, such as NCAN, Ipsen is committed to providing NET patients with information about their disease that extends beyond available options. We developed to serve as an information resource for this patient community."

Ninety-nine percent of patients surveyed stated that NETs are not well understood by most doctors. This is likely due to the fact that most doctors have never encountered a patient who has the disease. Treatment can require a multidisciplinary approach that includes the services of gastroenterologists, endocrinologists, oncologists, surgeons, and many other specialists. On average, NET patients consulted with 3 different doctors to determine the cause of their symptoms before they were diagnosed. Eighty-five percent of patients surveyed said they have frequently felt frustration as a result of their disease.

The NET patient survey was conducted by NCAN and Ipsen as part of Ipsen's KnowYourNETS education campaign. The initiative aims to provide people living with NETs, as well as their caregivers, with education about the disease, helpful resources, and the support needed to help them manage the disease.

About Gastrointestinal and Pancreatic Neuroendocrine Tumors

Gastrointestinal and pancreatic neuroendocrine tumors, also known as gastroenteropancreatic neuroendocrine tumors, are a rare type of cancer. It is diagnosed in approximately 5 out of every 100,000 people in the U.S. The average time until a GEP-NET patient is accurately diagnosed is at least 5 years, with more than 80% of patients seeing at least three doctors prior to their diagnosis. Because of this, most patients are diagnosed while in the advanced stages of the disease, which often leads to a poor prognosis. Additionally, the symptoms of GEP-NETs are gastrointestinal in nature, thus they can be misdiagnosed as Crohn's disease or irritable bowel syndrome (IBS).

About the Neuroendocrine Cancer Awareness Network (NCAN)

NCAN is a 501(c)(3) non-profit incorporated in 2004. Its mission is to intensify awareness of Neuroendocrine Cancer including Carcinoid. NCAN provides access to information about NETs, and funding for NET cancer research. For the past 12 years, NCAN has provided information and support to NET patients and caregivers through e-mail, online, and a toll free phone number, and has produced over 40 patient conferences to help patients understand their disease. The phone line is open 7 days a week 9 am – 9 pm EST, 365 days a year. The phone line is answered by a patient or a caregiver at all times.

Abhi Basu

SOURCE Neuroendocrine Cancer Awareness Network (NCAN)