Advanced Accelerator Applications, International (AAA), a Novartis company, is recognizing NET Cancer Day on November 10, 2020, with its third annual Hope Is Like Air campaign to raise awareness of neuroendocrine tumors (NET). NET Cancer Day was founded by the International Neuroendocrine Cancer Alliance (INCA). Along with INCA, AAA and NET patient organizations in the United States, Europe, and Canada are joining forces to shed light on this rare, often misdiagnosed form of cancer by sharing zebra-striped pinwheels to raise awareness of NETs.
NET patient advocacy groups participating in the Hope Is Like Air pinwheel project include Arizona Carcinoid and Neuroendocrine Foundation, The Healing NET Foundation, Los Angeles Carcinoid Neuroendocrine Tumor Society, The Carcinoid Cancer Foundation, Neuroendocrine Tumor Research Foundation, Neuroendocrine Cancer Awareness Network, Northern California CarciNET Community, PheoPara Alliance and Run for The Stripes in the United States; as well as Association de Patients porteurs de Tumeurs Endocrines Diverses (APTED) France, Association of Patients and Supporters of Neuroendocrine Tumors Poland, CNETS Canadian Neuroendocrine Tumor Society, NET Patient Association Belgium, Foundation Pro Endocrinologia Poland, and EuropaColon Portugal.
“NET is a rare cancer, often misdiagnosed, requiring a greater need for education,” said Rachel Levine, Global Head of Communications and Patient Advocacy at AAA. “The Hope is Like Air campaign aims to raise awareness while providing hope and support for patients and caregivers. Our displays of support may be mostly virtual this year to keep everyone safe, but our commitment remains strong.”
Zebra stripes are the symbol of neuroendocrine tumors, meant to signify the individuality of each patient and their disease. According to The National Geographic Society, the zebra has the most unique coat of all animals. Each individual zebra has its own striped pattern and no two are exactly alike. Similarly, no two NET cancer patients are the same. Zebra stripes are also meant to prompt medical professionals to consider diagnoses beyond the most common ones. As the disease is rare and often overlooked, the neuroendocrine tumor community encourages health care providers to figuratively consider the rare and unexpected possibility of a zebra, not a common horse, when they hear hoofbeats.
About Neuroendocrine Tumors1, 2, 3
Neuroendocrine tumors, or NET, are a rare type of cancer that originate in neuroendocrine cells throughout the body. They are most often found in the gastrointestinal tract, lungs, or pancreas. Each year 6.98 out of every 100,000 people are diagnosed with NET. NETs can be defined as functional or nonfunctional. Functional NET are characterized by symptoms caused by the over-secretion of hormones and other substances, while nonfunctional NETs may be clinically silent.
Symptoms often appear once the tumor produces hormones or grows into surrounding tissues and organs. Non-specific signs and symptoms of NET include, but are not limited to, abdominal pain, wheezing, diarrhea, fatigue, flushing, weight loss, and palpitations.
NET tend to grow slowly and can have no symptoms or vague symptoms that can be mistaken for other conditions. As a result, NET is often diagnosed at an advanced stage, meaning the cancer cells have already spread to other parts of the body.
Participating Patient Group Websites
- Arizona Carcinoid and Neuroendocrine Foundation
- Association de Patients porteurs de Tumeurs Endocrines Diverses (APTED) France
- Association of Patients and Supporters of Neuroendocrine Tumors Poland
- Carcinoid Cancer Foundation
- CNETS – Canadian Neuroendocrine Tumour Society
- EuropaColon Portugal
- Foundation Pro Endocrinologia Poland
- Los Angeles Carcinoid Neuroendocrine Society (LACNETS)
- NET Patient Association Belgium
- Neuroendocrine Cancer Awareness Network
- Neuroendocrine Tumor Research Foundation (NETRF)
- Northern California CarciNET Community
- PheoPara Alliance
- Run for the Stripes
- The Healing NET Foundation
- INTERNATIONAL ATOMIC ENERGY AGENCY, Practical Guidance on Peptide Receptor Radionuclide Therapy (PRRNT) for Neuroendocrine Tumours, Human Health Series No. 20, IAEA, Vienna (2013).
- Dasari A, et al. Trends in the incidence, prevalence, and survival outcomes in patients with neuroendocrine tumors in the United States. JAMA Oncol. 2017; 3(10):1335-1342.
- Yao, J. et al. One Hundred Years After “Carcinoid”: Epidemiology of Prognostic Factors for Neuroendocrine Tumors in 35,825 Cases in the United States. J Clin Oncol. 2008:26:3063-3072.