Navigating Neuroendocrine Tumors

In In The News by Barbara Jacoby

New NCCN Guidelines for Patients: NET provides background and treatment information for the
type of cancer experienced by Aretha Franklin and Steve Jobs

The National Comprehensive CancerNetwork® (NCCN®) has published a brand new NCCN Guidelines for Patients focused on neuroendocrine tumors (NET). This cancer type can originate in many different parts of the body, have variable symptoms and require individualized and complicated treatment approaches. These new guidelines offer up-to-date information to help patients and caregivers make knowledgeable medical decisions. The NCCN Guidelines for Patients: NET were funded by the NCCN Foundation®, with sponsorship from the Neuroendocrine Cancer Awareness Network (NCAN) and The Healing NET Foundation. The content has also been endorsed by The
Carcinoid Cancer Foundation, Inc. and the Neuroendocrine Tumor Research Foundation (NETRF).

“It is imperative to have access to the best and most accurate information when coming up with a
treatment plan,” said Maryann Wahmann, Patient and Founder of NCAN. “The NCCN Guidelines
for Patients: NET is an amazing resource for patients and caregivers, helping them become their
best self-advocate.”

“As an NET patient and an advocate for NET education, I especially like that the patient guidelines provide a better road map to understand and navigate care, as well as the opportunity to communicate more effectively with health care providers,” said Cindy Lovelace, Patient and Co-Founder of  The Healing NET Foundation. “Neuroendocrine tumors are complicated and the treatment paths are varied because the disease presents and behaves differently in each patient. The NCCN Patient Guidelines offer a common ground of understanding so patients and providers can work as a team to achieve the best possible care.”

As with all NCCN patient guidelines, the information is based on the evidence and expert-consensus available in the clinical practice guidelines created by NCCN’s multidisciplinary panels from 27 leading academic cancer centers throughout the United States. The treatment recommendations are presented in user-friendly terms, complete with glossary, illustrations, andspace for notes. The guidelines are intended to empower patients while also safeguarding themfrom misinformation.

“When people with neuroendocrine tumors seek information on what to expect, they often find a lot of confusing advice online,” explained Whitney S. Goldner, MD, Fred & Pamela Buffett Cancer Center, Vice-Chair of the NCCN Guidelines Panel for Neuroendocrine and Adrenal Tumors. “They might even know someone with a NET, but in a different location, leading them to expect symptoms and treatment courses that won’t apply to their circumstances.”

The most-common types of NETs are carcinoid tumors found in the lung, airways, small intestine,
rectum, appendix, and thymus. Another common type is found in the pancreas. In some locations, NETs can cause hormones to be released into the blood system.

“It really takes a multidisciplinary team to treat these tumors,” Dr. Goldner continued. “Everybody
plays a different role in the care of NETs, including endocrinologists, medical oncologists, surgical
oncologists, radiation oncologists and sometimes nuclear medicine radiologists. These guidelines
help prepare patients for the group of people who will comprise their treatment team, and ensure
they understand the need for specific testing and therapies for their tumor.”

While neuroendocrine tumors often occur in patients without any risk factors, there are some that
result from hereditary, genetic syndromes. Awareness of NETs has increased over the past decade, helping doctors to correctly diagnose it more quickly. Advances in imaging have also led to more targeted therapies.

The NCCN Guidelines for Patients are available free-of-charge online at NCCN.org/patients, or via the NCCN Patient Guides for Cancer app. Printed versions can be purchased at Amazon.com or a small fee.

NCCN Guidelines for Patients and NCCN Quick GuideTM sheets DO NOT replace the expertise and clinical judgment of the clinician. To help support these tools, visit NCCN.org/patients or text “GIVE” to 856-FOR-NCCN (856-367-6226).

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About The Healing NET Foundation

The Healing NET Foundation is a non-profit 501(c)(3) organization co-founded by a neuroendocrine tumor (NET) specialist and a patient, who both saw a need for better educationand communication about the disease across the healthcare landscape. The Healing NET Foundation’s mission is to optimize the care of those with neuroendocrine cancer through the education of and collaboration among physicians, health care providers, patients and caregivers. Learn more at thehealingnet.org and follow on Facebook, Twitter, and Instagram.

About the Neuroendocrine Cancer Awareness Network (NCAN)

The Neuroendocrine Cancer Awareness Network (NCAN) is a non-profit organization dedicated
to raising awareness of Neuroendocrine Cancer, providing support for caregivers and people with
NETs, and funding for NET cancer research. Since 2003, it has been our mission, or as we like to
say, our passion, to educate and support the NET community as a whole. That’s our thing. Learn
more at netcancerawareness.org or Facebook.com/NETCancerAwareness/.

About the NCCN Foundation

The NCCN Foundation® was founded by the National Comprehensive Cancer Network® (NCCN®)
to empower people with cancer and advance oncology innovation. The NCCN Foundation
empowers people with cancer and their caregivers by delivering unbiased expert guidance from
the world’s leading cancer experts through the library of NCCN Guidelines for Patients® and other
patient education resources. The NCCN Foundation is also committed to advancing cancer
treatment by funding the nation’s promising young investigators at the forefront of cancer
research.For more information about the NCCN Foundation, visit NCCN.org/patients.
About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading
cancer centers devoted to patient care, research, and education, is dedicated to improving the
quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through
the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN
develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance
of continuous quality improvement and recognizes the significance of creating clinical practice
guidelines appropriate for use by patients, clinicians, and other health care decision-makers.

Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit
NCCN.org/news. Follow NCCN on Twitter @NCCNnews and Facebook
@National.Comprehensive.Cancer.Network.

Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.