Neuroendocrine Tumours (NETs): Symptoms, Causes, Diagnosis & Treatments Explained in Detail

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Illustration showing people concerned about health, representing symptoms and awareness of neuroendocrine tumours (NETs)

Neuroendocrine Tumours (NETs): Symptoms, Causes, Diagnosis & Treatments 🧠✨

Have you recently come across the term neuroendocrine tumour (NET) and wondered what it really means? 🤔 You’re not alone. This condition is rare, complex, and often misunderstood. Many people only hear about NETs after a diagnosis, which can feel overwhelming.

This comprehensive guide is designed to help you understand what neuroendocrine tumours are, their symptoms, causes, stages, treatments, and ways to cope. By the end, you’ll have a clear roadmap of what NETs mean and how they are managed.

👉 Whether you’re newly diagnosed, supporting a loved one, or simply curious, this article will give you professional yet easy-to-digest insights.


🌟 What Are Neuroendocrine Tumours (NETs)?

neuroendocrine tumour (NET) is a rare form of cancer that begins in the neuroendocrine cells. These special cells are scattered throughout your body, especially in the:

  • Pancreas
  • Digestive system (stomach, small intestine, rectum, appendix)
  • Lungs
  • Adrenal glands
  • Thyroid

These cells act like “dual-role messengers” 📨 — they receive signals from the nervous system and release hormones into the bloodstream.

🔑 Key fact: Some NETs grow very slowly, while others are aggressive and spread quickly.


🧩 Types of Neuroendocrine Tumours

NETs can develop in different organs, and their behavior varies depending on the site. Here are the main types:

1. Pancreatic Neuroendocrine Tumours (pNETs)

  • Arise in the pancreas.
  • May release hormones such as insulin or glucagon.
  • Functional pNETs cause hormone-related symptoms.
  • Non-functional pNETs may not produce hormones and are often diagnosed late.

2. Gastrointestinal NETs (GI NETs)

  • Found in the stomach, intestines, appendix, or rectum.
  • Sometimes produce serotonin or other hormones, causing carcinoid syndrome.
  • In some cases, they grow silently and are discovered during unrelated scans.

3. Lung NETs

  • Known as carcinoid tumours.
  • Two types: typical (slow-growing) and atypical (faster-growing).
  • May cause coughing, wheezing, or chest pain.

4. Adrenal Gland NETs (Pheochromocytoma)

  • Develop in the adrenal glands above the kidneys.
  • Release adrenaline-like hormones, leading to high blood pressure, palpitations, sweating, and headaches.

5. Medullary Thyroid Carcinoma (MTC)

  • rare thyroid NET.
  • Often linked to genetic syndromes like MEN2.

👉 Why it matters: Knowing the type of NET helps doctors plan the best treatment.


📊 Stages & Grades of Neuroendocrine Tumours

Understanding the stage (spread) and grade (cell growth rate) is crucial.

Staging (Extent of Spread)

  • Stage 1: Small, localized tumour.
  • Stage 2: Larger, may involve nearby tissues.
  • Stage 3: Spread to nearby lymph nodes.
  • Stage 4: Spread (metastasis) to distant organs such as liver, lungs, or bones.

Grading (Cell Behavior)

  • Grade 1: Slow-growing, cells look almost normal.
  • Grade 2: Moderate growth, cells slightly abnormal.
  • Grade 3: Fast-growing, abnormal-looking cells.

 Tip: A Stage 4 Grade 1 tumour may progress more slowly than a Stage 2 Grade 3 tumour.


⚠️ Symptoms of Neuroendocrine Tumours

Symptoms vary depending on the tumour’s location and hormone activity.

Common Symptoms:

  • Digestive issues: Bloating, diarrhoea, abdominal pain.
  • Skin flushing (redness, especially face & neck).
  • Unexplained weight changes.
  • High blood pressure or blood sugar problems.
  • Persistent cough or wheezing (lung NETs).
  • Fatigue & weakness.
  • Palpitations & fast heartbeat.
  • Unexplained fever or infections.
  • Dizziness or fainting due to low blood sugar.

👉 Because these symptoms mimic common conditions, NETs are often diagnosed late.


🧬 What Causes Neuroendocrine Tumours?

The exact cause is not fully understood, but several factors play a role:

  • Genetics: Inherited syndromes like MEN1, MEN2, Von Hippel–Lindau disease.
  • DNA mutations: Changes in genes controlling cell growth.
  • Age factor: More common after 40 years old.
  • Environmental exposure: Chemicals or toxins (limited evidence).
  • Chronic inflammation: Long-term digestive issues may increase risk.
  • Weakened immunity: Reduced ability to destroy abnormal cells.

📌 Risk Factors

Having one or more risk factors doesn’t guarantee you’ll develop a NET, but it increases the likelihood.

  • Family history of NETs or genetic syndromes
  • Age 40+
  • Gender differences (some NETs slightly more common in men/women)
  • Smoking 🚬 (increases lung NET risk)
  • Unhealthy diet & lifestyle
  • Chronic gastritis or ulcers
  • Previous radiation exposure

🚨 Possible Complications

If untreated or advanced, NETs can lead to:

  • Hormone overproduction → high blood pressure, diarrhoea, glucose imbalance.
  • Carcinoid syndrome → flushing, diarrhoea, wheezing.
  • Carcinoid heart disease ❤️ → heart valve damage.
  • Liver damage (if cancer spreads).
  • Digestive blockages/bleeding.
  • Nutritional deficiencies.
  • Emotional & mental stress 😔.

🔍 Diagnosis of Neuroendocrine Tumours

Diagnosing NETs often involves multiple tests:

  • Medical history & exam.
  • Blood tests (chromogranin A, hormone levels).
  • Urine tests (5-HIAA for serotonin breakdown).
  • Imaging scans: CT, MRI, PET.
  • Endoscopy/Colonoscopy (if GI NET suspected).
  • Biopsy (microscopic confirmation).
  • Nuclear medicine scans (Octreotide scan, Gallium-68 PET).
  • Genetic testing (if hereditary risk suspected).

💊 Treatment Options

Treatment depends on tumour type, size, spread, and hormone activity.

Main Treatments:

  1. Surgery – Best for localized tumours.
  2. Radiotherapy – Targets tumour cells with radiation.
  3. Chemotherapy – For aggressive/high-grade NETs.
  4. Targeted therapy – Blocks tumour-specific growth pathways.
  5. Hormone therapy – Manages symptoms & tumour growth.
  6. PRRT (Peptide Receptor Radionuclide Therapy) – Delivers radioactive drugs directly to tumour cells.
  7. Ablation/Embolization – Treats liver tumours by heat or blocking blood supply.
  8. Supportive care – Relieves pain, fatigue, digestive issues.

💚 Coping & Support

A NET diagnosis affects both body and mind. Here are coping strategies:

  • Talk openly with loved ones or counsellors.
  • Join support groups (both local & online).
  • Stay informed 🧾 about new treatments.
  • Practice self-care (balanced diet, light exercise, rest).
  • Take one step at a time – don’t overwhelm yourself.

🛡 Prevention & Lifestyle

While NETs can’t always be prevented, you can reduce risks by:

  • Knowing family history & screening if needed.
  • Regular health check-ups.
  • Not smoking 🚭.
  • Staying active 🏃‍♂️.
  • Eating a balanced diet 🥗.
  • Managing chronic conditions.

Conclusion

Neuroendocrine tumours (NETs) are rare but increasingly recognized cancers. They may grow silently, mimic other conditions, and cause hormone-related issues.

Early detection, correct diagnosis, and tailored treatment make a huge difference. With modern therapies, many people live long, fulfilling lives despite NETs. 💪💚


FAQs

Q1: How serious are NETs?
Some are slow-growing and manageable; others are aggressive.

Q2: Are NETs curable?
Yes, if detected early and surgically removed. Advanced NETs can be controlled with treatment.

Q3: Can I live long with NETs?
Absolutely. Many patients live decades with proper treatment.

Q4: What’s the best treatment?
Depends on tumour type and stage. Options include surgery, PRRT, and hormone therapy.

Q5: How can I detect NETs early?
Through regular check-ups, imaging scans, and hormone tests, especially if you have risk factors.


📚 Sources


⚠️ Disclaimer

This article is for educational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always consult your doctor or qualified healthcare provider with any medical concerns.

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