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PubMed This is a summary of 105 peer-reviewed journal articles Updated
Oncology

Your Complete Guide to Navigating Neuroendocrine Neoplasms (NENs)

At a Glance

Neuroendocrine Neoplasms (NENs) are rare, biologically unique tumors that require specialized care. This comprehensive guide helps patients understand the critical difference between NETs and NECs, decode pathology reports, navigate imaging like DOTATATE PET scans, and build an expert care team.

Welcome to your comprehensive resource guide for navigating a diagnosis of a Neuroendocrine Neoplasm (NEN). A NEN diagnosis often marks the end of a long, confusing search for answers and the beginning of a complex medical journey. Because these tumors are rare and biologically unique, educating yourself is one of the most powerful things you can do to advocate for your care.

This guide is designed to empower you with evidence-based information translated into plain language. It will help you understand your pathology report, make sense of specialized imaging, prepare for treatment discussions, and navigate the daily realities of living with a NEN.

Guide Contents

01

Understanding Your Diagnosis: An Overview of Neuroendocrine Neoplasms (NENs)

Learn the basics of your neuroendocrine neoplasm (NEN) diagnosis. Understand the difference between NETs and NECs, Ki-67 scoring, and what to expect next.

02

Decoding Your Pathology Report: NEN Biology and Grading

Learn how to read your neuroendocrine neoplasm (NEN) pathology report. Understand Ki-67 index, tumor grading, NET vs. NEC, and what your results mean.

03

Where and Why: Locations, Subtypes, and Symptoms of NENs

Learn about neuroendocrine neoplasm (NEN) locations and symptoms. Understand functional vs non-functional tumors, carcinoid syndrome, and common misdiagnoses.

04

Mapping the Disease: Specialized Imaging and Biomarkers

Learn about specialized imaging and blood tests for neuroendocrine neoplasms (NENs). Understand DOTATATE PET/CT scans, CgA, and 24-hour 5-HIAA urine tests.

05

Standard of Care Treatment Strategies for NENs

Explore standard treatments for neuroendocrine neoplasms (NENs). Learn about SSAs, surgery, PRRT, targeted therapies, and chemotherapy based on tumor grade.

06

Living with NENs: Monitoring and Survivorship

Learn how to manage neuroendocrine neoplasms (NENs) as a chronic condition. Understand surveillance scans, carcinoid syndrome treatments, and nutrition.

07

Building Your Care Team and Preparing for Appointments

Learn how to build a multidisciplinary care team for neuroendocrine neoplasms (NENs). Discover which specialists to see, questions to ask, and how to prepare.

Take this guide one step at a time. You do not need to read it all at once. Use it to build your knowledge, generate questions for your medical team, and regain a sense of control over your health.

Common questions in this guide

What is the difference between NETs and NECs?
Neuroendocrine tumors (NETs) generally grow more slowly, while neuroendocrine carcinomas (NECs) are fast-growing and aggressive. Your pathology report will specify which type you have based on how the cells look and divide.
Why is specialized imaging needed for NENs?
Standard scans often miss NENs because of their unique biology. Specialized imaging like SSTR-PET/CT (such as a DOTATATE scan) looks for specific receptors on the tumor cells, making it the gold standard for mapping the disease.
What kind of doctor treats neuroendocrine neoplasms?
Because NENs are rare and complex, they require a multidisciplinary team (MDT) of experts. This team typically includes medical oncologists, endocrinologists, surgeons, nuclear medicine specialists, and pathologists who specialize in neuroendocrine disease.
How are neuroendocrine neoplasms treated?
Treatment depends on your tumor's specific grade, biology, and location. Common standard-of-care therapies include surgery, somatostatin analogs (SSAs), peptide receptor radionuclide therapy (PRRT), and targeted therapies.

This guide provides an educational overview of neuroendocrine neoplasms (NENs). It is for informational purposes only and does not replace professional medical advice. Always consult your multidisciplinary oncology team for personalized guidance on your specific diagnosis.

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