Most patients with neuroendocrine tumors (NETs) wish that they and their physicians had more information about their disease, according to a survey commissioned by the Neuroendocrine Cancer Awareness Network (NCAN) and Ipsen Biopharmaceuticals, Inc.1,2

“The survey highlighted that 98% of patients wish they had access to more information about their disease…[and] found that 99% of NET patients believe that their condition isn’t well understood by most doctors,” said Cynthia Schwalm, president and CEO of Ipsen Biopharmaceuticals in an e-mail interview with Cancer Therapy Advisor.

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The survey of 265 US adults being treated for NETs was conducted between July 11th and August 13, 2015. 2 Respondents were asked about events leading up to their NET diagnosis, how having NETs affected them, where they turned to for support and information, and what they thought about the quality of information they obtained.

Responses showed 35% of respondents visited at least 4 physicians and 38% had symptoms for more than 5 years before their NETs were diagnosed. On average, each patient had to consult with 3 physicians to receive the correct diagnosis.

“Because only about 5 in every 100 000 Americans are affected by NETs, most doctors have little experience when it comes to diagnosing this rare disease,” Schwalm said. She added that patients with NETs can be particularly difficult to diagnose, because they typically present vague symptoms.

Schwalm said, “Patients want to be confident in not only their own understanding of NETs but also in their doctors’ knowledge of signs, symptoms, and treatments.”

A lack of confidence in their health care provider’s knowledge may explain why, according to Schwalm, the survey found “half of all NET patients…prefer to consult online resources before they go to their doctors with questions about their disease.” In addition, slightly more than 90% of respondents said they actively seek out information about NETs in general, including information about treatment options.

To address the desire patients with NETs have for reliable information about their condition, Ipsen Pharmaceuticals has launched, a website that explains the disease process and related terms, offers patient stories, and includes a list of credible resources.

“We hope that this site can be a support tool for patients who are eagerly seeking more information about their disease or who are looking for stories about other patients going through similar experiences,” Schwalm said.

Most survey respondents (85%) acknowledged that they were often frustrated with their disease, and 22% said they felt that their physicians did not understand their frustrations with NETs or its symptoms. In response, Ipsen included a “Doctor Discussion Guide” at, which is designed to help patients communicate better with their physicians.

NETs can be malignant or benign and can arise at various sites in the body, such as the lungs, brain, or gastrointestinal tract.3 Gastrointestinal NETs are the most common.4

Although NETs remain a rare diagnosis, the incidence of NETs has increased over the past few decades, possibly because of better methods of detection.4 The 5-year survival rate for NETs varies by site. Among patients with gastrointestinal NETs, individuals with tumors in the rectum or appendix have the best 5-year survival rate (96%), followed by individuals with tumors in the small intestine (86%), stomach (83%), or colon (68%).4 Earlier diagnosis and treatment are associated with better outcomes.3

“It is important to use all available resources to provide patients with reliable information about treatment options,” Schwalm concluded.


  1. Neuroendocrine Cancer Awareness Network releases data from new survey of neuroendocrine cancer patients [news release]. Bellmore, NY: Neuroendocrine Cancer Awareness Network; November 10, 2015. Accessed December 19, 2015.
  2. NCAN NET patient survey. Ipsen Bipoharmaceuticals, Inc. website. Accessed December 19, 2015.
  3. Neuroendocrine tumor: overview. American Society for Clinical Oncology. Accessed December 19, 2015.
  4. Tsikitis VL, Wertheim BC, Guerrero MA. Trends of incidence and survival of gastrointestinal neuroendocrine tumors in the United States: a SEER analysis. J Cancer. 2012;3:292-302.