Join Cole’s Team

Jennifer Morse thought she’d be moving her son Cole into his dorm room at Duke University this fall. Yet four years ago, Cole’s dream of playing for the Blue Devils was cut short by neuroendocrine cancer. This month we are honored to share Cole’s story. Meet this courageous young man through the eyes of his mom and Join Cole’s Team with a tribute gift to support vital NET research. Jennifer is partnering with NETRF to keep Cole’s last wish alive--to do everything possible so that no other family must endure the loss of a loved one to NETs. (READ MORE) 

Molecular Influences of Racial Disparities in Pancreatic Neuroendocrine Tumors

J. Bart Rose, III, MD, MAS, FACS has been awarded the 2021 NANETS Basic Translational Science Investigator Award, funded by NETRF.  Dr. Rose is an Assistant Professor of Surgical Oncology at the University of Alabama at Birmingham.  Dr. Rose’s project will seek to identify differences in epigenetic mutations responsible for driving early tumor metastasis in tumors from patients of different ethnic and racial groups.  He will investigate the molecular differences in pancreatic NET tumors from Black and Caucasian patients through genetic and epigenetic analyses as well as studies examining the interactions between tumor cells and the patient’s immune system. (READ MORE)

Research is the catalyst for scientists to better understand neuroendocrine tumors and use that knowledge to develop new diagnostics and treatments. If you are a patient with a neuroendocrine tumor who will be having surgery, you can help advance research into NETs by donating extra tumor tissue from your procedure.

Although tissues from any NET tumors are of tremendous research value, there is an immediate need for lung NET and pancreatic NET tissue. The more tumor samples collected—regardless of the type of NET tumor—the greater the chance for success in creating diverse NET cell lines.

Scientists use cell lines to create tumor models for further study. These models are critical to cancer research and can be used to analyze the genetic composition of tumors and test the effects of drugs. 

NETRF partners with Pattern.org to collect the tissue, and send it to the laboratory. There is no cost to patients, physicians, or hospitals to donate tissue. Even a small donation of tumor cells can have a big impact on NET research. For example, the Broad Institute created a new NET cell line from an intestinal tissue sample donated through this program. (READ MORE)

Finding the best treatment options for neuroendocrine cancer can be challenging and confusing. There is no single pathway for treatment and the recommendations may vary from patient to patient. Many patients seek a second opinion to have additional information about their NETs and treatment sequencing.  

The National Cancer Institute (NCI) is offering patients an opportunity to have their case discussed at its multidisciplinary tumor board, a gathering of NCI NET specialists who meet weekly to review cases. Dr. Jaydira Del Rivero, Director of the Center for Cancer Research’s Neuroendocrine Tumor Program says her group will review patients’ medical records and scans to provide input to them and their physicians. She says patients requesting this service should have a confirmed NET diagnosis and active disease. Patients do not need to travel to request this review by the tumor board. 

“We want to help provide the best care for patients, especially those without access to a NET specialist,” says Dr. Del Rivero. “Sometimes we confirm the treatments recommended by a patient’s treating physician, while other times we may know of a clinical trial that may be an option.”   

If you are interested in an NCI multidisciplinary tumor board review, talk with your physician, and contact Dr. Del Rivero at jaydira.delrivero@nih.gov for more information.

Become NETWise by tuning in to the NETWise podcast. Episode one: What You Need to Know About NETs covers how neuroendocrine cells become neuroendocrine tumors (NETs). Take a deep dive into understanding prognosis, stage and grade of NETs and the “upside down” nature of NET primaries and metastases. If you are newly diagnosed, this is for you. (LISTEN NOW)

After you listen to the podcast, test your knowledge with NETQuiz #4 from LACNETS. (TAKE QUIZ)