Nashville ---The inaugural international Healing NET Foundation Summit delivered on its promise to bring key discussions on diagnosis and care for the complicated NET-Cancer to the forefront of debate by many of the world’s leading physician and research experts. Topics covered the use of Somatostatin analogues and other targeted drugs and chemotherapies along with the combinations of treatment at the micro/molecular level and the macro/surgical levels to help patients live longer and more productive lives. One of the drugs, Afinitor, received Food and Drug Administration (FDA) approval for GI and Lung NETs tumors this week. The Summit’s faculty also looked at the use of biomarkers in clinical practice, staging of disease and the use of nuclear medicine. New surgical techniques and tools, and the care of children as well as adults were presented the NET-Cancer experts.
The Summit, organized in partnership with the Association for Value-Based Cancer Care (AVBCC), a successful division of The Lynx Group, brought leading researchers together with the physicians from across the United States and Europe who have had years of experience in treating patients with NET-Cancer. This disease is often misdiagnosed and treated, due in part to its previous reference as carcinoid tumors, and seen as a benign disease.
Summit organizers acknowledged that the meeting is a first step in examining and debating protocols for how patients with NET-Cancer are viewed by clinicians in locations across the United States. The overall goal is to diagnose the disease earlier and help define the best course of treatment once people are diagnosed. Patients and physicians, anxious for information of the Summit’s discussions, will be able to watch the panel discussions on video in the coming weeks and a summary document will be made available as quickly as possible for the medical community.
“The problem is that people who have NET-Cancers experience sets of symptoms that can easily be written off as common illnesses,” said Dr. Eric Liu, Chief Medical Advisor for The Healing NET Foundation.
“A typical patient experience is about five-seven years of doctor-hopping before a clinician might begin to put the puzzle pieces together and look for NET-Cancer tumors as the root cause of all the symptoms,” Liu explained.
Liu noted that there are medications and new diagnostic tests and treatments that can make a big difference in patient quality of life and long-term survival, but the clinician first has to suspect NET-Cancer.
The Healing NET Foundation is a 501(c)3 organization established to address the lack of information available to physicians and in particular, the first person a patient exhibiting these symptoms might see – their community doctor. The Foundation supports NET-Cancer education in the medical community and advocates for the best possible care for NET-Cancer patients.
“Physicians have a saying that can complicate the rare disease diagnosis,” said Cindy Lovelace, Executive Director of The Healing NET Foundation.
“In medical school, they are taught to think horses, when they hear hoofbeats, not zebras. In other words, consider the more common suspects and not a rare condition when a patient presents with symptoms. However, the NET-Cancer patient IS the zebra.”
Lovelace, a NET-Cancer survivor herself, was once referred to by an ER physician as a ‘zebra’ years before her diagnosis. “My cancer was discovered incidentally because of a scan for an unrelated condition and then took another eight months to figure out what it was,” she said. “Ironically, I was already being followed by an oncologist due to a breast cancer diagnosis five years previously, but there was no information and no protocol for this new cancer,” she said. It would take another six months for Lovelace to find an expert in NET-Cancer, but Lovelace considers herself one of the lucky ones. “Most people go years without answers to the puzzle,” she said. Liu agreed, “Just like no two zebra stripes are alike, no two NET-Cancer patients have exactly the same manifestation of the disease. Sometimes a patient has symptoms and sometimes, like Lovelace, the tumors are found incidentally with no symptoms.”
NET-Cancer which affects both sexes, all ages and all ethnicities can be managed if caught early with patients being then able to live productive lives. Liu noted that 90 percent of cancer patients in the United States are treated by community-based physicians operating outside the academic and research communities. This means that even when a patient is ultimately and properly diagnosed with NET-Cancer they will likely be followed by a doctor who has little experience with the disease.
“The Healing NET Foundation wants to help doctors pull all those pieces of the puzzle together by connecting them with expert physicians and facts – and ultimately help patients receive the best possible care for this rare disease,” said Lovelace.
The discussions at The Healing NET Foundation Summit are a step toward bringing the academic and research community experts together to begin sharing knowledge and experience that can help community-based physicians and specialists. Attendees were selected based on their experience in the diagnosis and treatment of NET-Cancer patients and represent 30 leading international centers of research and clinical care. They come from subspecialties of oncology, radiology, endocrinology, cardiology, gastroenterology, basic science and surgery.
Statistics that would reflect the incidence and prevalence of NET-Cancer in the United States are difficult to estimate. Examination of large government databases suggest that there are greater than 100,000 patients with this disease with the number of new cases increasing each year. However, tracking these patients is challenging because the terminology for this class of disease was only recently established.
The Lynx Group, an alliance of medical education and communication companies which includes the AVBCC, will be supporting the Summit with a team of writers who are tasked with capturing the discussions and areas of consensus to formulate information that will be made available to physicians nationwide to aid in the treatment of NET-Cancer patients.
“Our goal is to help assemble discussions from the expert panels of physicians and researchers and begin creating materials that will reflect the latest and most accurate information about NET-Cancer,” said Brian Tyburski, President and CEO of The Lynx Group.
“We are very excited to be able to be part of this inaugural Summit that has the potential to create a profound impact on the lives of many cancer patients and their families,” he said.
Abigail Adair, President of The Lynx Group said, “We are committed to getting the Summit information published and available to physicians and patients as rapidly as possible and are sensitive to the fact that these discussions can have an immediate impact in saving lives.”
New information gleaned from the Summit will serve as a companion and update to The Healing NET Foundation’s Primer for Healthcare Professionals, published in October, 2015, now available at www.TheHealingNET.org
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.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:
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 go to: www.TheHealingNET.org
ABOUT ASSOCIATION FOR VALUE-BASED CANCER CARE (AVBCC):
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 how 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. For more: www.avbcconline.org
ABOUT THE LYNX GROUP:
The Lynx Group, one of the fast growing medical education and communications companies, is a global strategic alliance of medical communications and education companies. Through its unique business model, The Lynx Group strives to provide pivotal and contemporary information and education for all stakeholders in healthcare. The Lynx Group is the official association management and marketing company of the Academy of Oncology Nurse & Patient Navigators, Association for Value-Based Cancer Care, Association for Oncology Practice Management and the National Association of Specialty Pharmacy. For more information visit: the-lynx-group.com
HEALING NET SUMMIT FACULTY
Co-Hosts:
Allen Cohn (Oncology, Rocky Mountain Cancer Centers, Denver, CO), Eric Liu (Neuroendocrinology/Surgery, Rocky Mountain Cancer Centers, Denver CO), Charles Nutting (Interventional Radiology, RIA, Denver, CO)
Scientific Advisory Committee:
George Fisher (Oncology, Stanford University, Palo Alto, CA), David Metz (Gastroenterology, University of Pennsylvania, Philadelphia, PA), Irvin Modlin (WREN
