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PubMed This is a summary of 151 peer-reviewed journal articles Updated
Endocrinology · Endocrine Tumor

Navigating Your Diagnosis: A Guide to Endocrine Tumors

At a Glance

Endocrine tumors are abnormal growths in the body's hormone-producing glands. They can be 'functional' (secreting excess hormones that cause full-body symptoms) or 'non-functional.' Treatment requires specialized imaging, pathology grading, and a multidisciplinary care team.

The endocrine system is a vast and vital network of glands that produce hormones—the chemical messengers that regulate almost every function in your body, from your heart rate and metabolism to your mood and growth. When the cells within these glands begin to grow abnormally, they can form tumors.

Being diagnosed with an endocrine tumor can feel incredibly overwhelming, largely because these tumors behave very differently than common cancers like breast or lung cancer. Endocrine tumors don’t just take up physical space; because they are born from hormone-producing tissues, they can sometimes actively secrete hormones, throwing your entire body’s chemical balance into chaos.

Whether you are dealing with a tumor of the thyroid, the pituitary gland in your brain, the adrenal glands above your kidneys, or a neuroendocrine tumor (NET) in your digestive tract, knowledge is your most powerful tool. This guide is designed to break down the complex biology, diagnosis, and treatment of endocrine tumors into clear, actionable information so you can confidently partner with your medical team.

Please explore the following pages to understand your diagnosis and build a strategic plan for your care:

01

Biology and Types of Endocrine Tumors

Learn about the biology and types of endocrine tumors. Understand how they affect glands like the thyroid and pituitary, plus functional vs mass effects.

02

Symptoms and Functional Syndromes

Learn the symptoms of functional and non-functional endocrine tumors. Understand hormone syndromes like carcinoid and Cushing's, plus mass effect signs.

03

Genetics and Hereditary Syndromes (MEN1, MEN2)

Learn about MEN1 and MEN2 hereditary syndromes. Understand how genetic mutations impact endocrine tumors, screening, and prophylactic surgery for your family.

04

Pathology and Grading (Ki-67, NET vs NEC)

Learn how to read your neuroendocrine tumor (NEN) pathology report. Understand the difference between NET and NEC, Ki-67 index, grading, and key IHC markers.

05

Diagnosis and Specialized Imaging

Learn how endocrine tumors are diagnosed using biochemical blood tests, urine markers like 5-HIAA, and specialized imaging like Ga-68 DOTATATE PET/CT scans.

06

Treatment Strategies and PRRT

Explore treatment options for endocrine and neuroendocrine tumors (NETs). Learn about surgical resection, PRRT, somatostatin analogs (SSAs), and RAI therapy.

07

Building Your Care Team and Monitoring

Learn how to build a multidisciplinary care team for endocrine and neuroendocrine tumors. Understand tumor boards, long-term monitoring, and hormone therapy.

Common questions in this guide

What is the difference between a functional and non-functional endocrine tumor?
A functional endocrine tumor actively secretes hormones, which can disrupt your body's chemical balance and cause widespread symptoms like flushing or rapid heart rate. A non-functional tumor does not produce excess hormones and usually only causes symptoms if it presses on surrounding tissues.
What are the common symptoms of an endocrine tumor?
Symptoms vary depending on which gland is affected and whether the tumor secretes hormones. You may experience systemic issues like sudden skin flushing, unexplained diarrhea, racing heart rate, and fatigue, or localized symptoms like headaches, vision changes, and fullness in the neck or abdomen.
What does the Ki-67 index mean on my pathology report?
The Ki-67 index is a percentage on your pathology report that indicates how fast the tumor cells are growing and dividing. A lower Ki-67 number generally means a slow-growing tumor, while a higher number suggests a faster-growing, more aggressive tumor.
Why is a Multidisciplinary Tumor Board (MDT) important for my care?
Because endocrine tumors are complex and behave differently than common cancers, they require specialized expertise. An MDT ensures that doctors from different fields—such as endocrinologists, oncologists, and surgeons—collaborate to build the most effective, personalized treatment plan for you.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Which specific endocrine gland is the primary site of my tumor?
  2. 2.Is my tumor considered a specific neuroendocrine tumor (NET) or a general endocrine tumor (like thyroid or pituitary)?
  3. 3.Is my tumor 'functional' (producing hormones) or 'non-functional'?
  4. 4.What is the 'grade' of my tumor, and what was the Ki-67 index on my pathology report?
  5. 5.Has my case been reviewed by a Multidisciplinary Tumor Board (MDT)?

Questions For You

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This guide provides educational information about endocrine tumors and is not a substitute for professional medical advice. Always consult your multidisciplinary care team to discuss your specific diagnosis, pathology reports, and treatment options.

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