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World Cancer Day Provides Springboard for NET-Cancer Summit

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NASHVILLE — Diagnosis and treatment of Neuroendocrine (NET) Cancers will be debated Feb. 24- 26 when physicians and bench researchers from more than 30 research hospitals across the United States and Europe gather in Beaver Creek, Colorado, for a Summit hosted by The Healing NET Foundation in partnership with the Association for Value-Based Cancer Care.

Celebrities such as Steve Jobs, Dave Thomas and Audrey Hepburn are among the thousands of individuals who have fought NET-Cancer, formerly referred to as carcinoid cancer. Patients tend to present unusual and what could be viewed as common sets of symptoms which can cause them to be misdiagnosed with more common benign diseases, or have a tumor discovered incidentally without any symptoms at all.

The zebra has become symbolic of NET-Cancer patients, because medical students are encouraged to think of common illness rather than to view every patient as having an obscure problem, but sometimes common symptoms can be caused by something unusual, “like zebras”. Just like no two zebra stripes are alike, no two NET-Cancer patients have exactly the same manifestation of the disease, which makes it more difficult to establish a protocol treatment.

Attendees of the inaugural Healing NET Foundation Summit will share their clinical experiences in the diagnosis and treatment of NET-Cancer patients. It presents in people of both sexes, all ages and all ethnicities, causing confusing symptoms and sometimes no symptoms. Many NET-Cancer patients often spend five to seven years “doctor hopping” before an accurate diagnosis, dramatically reducing chances of successful treatment and possible recovery. If caught early, however, NET-Cancer can be manageable, and patients may live productive lives.

With a mission to further awareness of and education about NET-Cancer in the medical community and to profoundly impact the quality of patient care, The Healing NET Foundation views the Summit as a step toward bringing the academic and research community experts in the disease together to begin sharing knowledge and experience with community-based physician specialists.

The goal of the Summit is to develop material to distribute accurate information about NETs cancers that prompts physicians to reflect NET-Cancer as the primary diagnosis rather than continue to treat random symptoms in difficult-to-diagnose patients. Patients with an array of symptoms are frequently shuffled among specialized practices like oncology, radiology, endocrinology, pulmonology, cardiology, gastroenterology and surgery.

With 90 percent of cancer patients in the United States treated by community-based physicians operating outside academic and research communities, even if a patient is ultimately properly diagnosed with NETs, a community-based doctor may have little access to information that will allow them to successfully treat NET-Cancer patients.

Participants at the Healing NET Foundation Summit are prepared to share good news about the effective use of some existing cancer drugs in treating NETs and eminent FDA approval of a new tool that will enable physicians to make earlier and more definitive diagnoses.

Summary documents resulting from the Summit are being distributed to physicians to help better identify NET-Cancers and provide proper care for NET patients. The new information will serve as a companion and update to The Healing NET Foundation’s Primer for Healthcare Professionals published in October 2015, which is available at www.TheHealingNET.org.




ABOUT NEUROENDOCRINE (NETs)

Neuroendocrine cells produce hormones that control breathing and digestion. Sometimes these cells go haywire and become tumors that grow anywhere in the body but are most commonly found in the intestines, pancreas and liver. They can also develop in the lung and are even associated with a heart valve defect. The fact that the tumors can be anywhere means that patients may have confusing symptoms sending them to a series of specialists, who, not seeing a bigger picture, will treat symptoms but miss the root cause.

Among the frequently misdiagnosed symptoms are cramping, intestinal upsets, diarrhea, flushing faces, breathing difficulty, deep vein thrombosis or even hypoglycemia.

ABOUT THE HEALING NET FOUNDATION
www.thehealingnet.org

The Healing NET Foundation is a non-profit 501(c)3 formed to raise awareness, support and to help fund the best possible care for patients with neuroendocrine tumors (NETs). By developing access to state-of-the-art information and training for physicians in the United States to catch up with successful practitioners in other parts of the world, The Healing NET Foundation seeks to then enable multi-disciplinary practitioners to provide the comprehensive care essential for NET-Cancer patients. By educating the public, The Healing NET Foundation seeks to connect patients with physicians prepared to provide comprehensive care. For more about The Healing NET Foundation: www.TheHealingNET.org

ABOUT ASSOCIATION FOR VALUE-BASED CANCER CARE (AVBCC)
www.avbcconline.org

The mission of AVBCC is to provide a forum for payers, providers and the entire oncology team to consider and evaluate the cost-value issues particular to cancer treatments and its impact on patient care and outcomes. This unique focus is achieved through discussions and collaborations with those involved in evaluating therapies, treating patients, and paying for care.

AVBCC is the fastest growing national specialty organization dedicated to improving the care of cancer patients and their quality of life by discussing, considering, and evaluating the value equation of it relates to new and existing cancer therapies. This organization, which currently consists of more than 500 members, was established to provide a network for payers and oncology healthcare professionals to interact and network in order to promote optimal care for patients and their families.

HEALING NET SUMMIT UNDERWRITERS

Novarits
Lexicon
AAA
Angio Dynamics
BioTheranostics

Foundation Medicine
Neuroendocrine Cancer Awareness Network
Anonymous Donor
Sarah Cannon Cancer Network
Chiasma

Last modified: August 12, 2016
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