Neuroendocrine Cancer

Neuroendocrine Tumours (NETs) are a group of rare, usually slow-growing cancers that develop from specialised neuroendocrine cells. These unique cells are found throughout the body, acting as a crucial bridge between our nervous system and our endocrine (hormone-producing) system. Because neuroendocrine cells are present in multiple organs, NETs can start in various places, most commonly in the gastrointestinal tract (stomach and intestines), the lungs, and the pancreas.

While a cancer diagnosis is always challenging, it is important to know that NETs are highly treatable, manageable diseases, especially when diagnosed early.

        NET Team within the Nuclear Medicine Department

        NET Team within the Nuclear Medicine Department

        How Neuroendocrine Cells Work

        To understand NETs, it helps to understand what neuroendocrine cells do. In a healthy body, these cells receive signals from the nervous system and respond by releasing hormones into the bloodstream to control bodily functions—such as regulating digestion or managing airflow in the lungs.

        When these cells become cancerous, they can multiply abnormally. They are generally categorized into two types based on how they behave:

        • Functional Tumours: These tumours continue to produce and secrete large amounts of hormones into the body. This excess of hormones can cause distinct physical symptoms, often referred to as “Carcinoid Syndrome.”

        • Non-Functional Tumours: These tumours do not release excess hormones. They are often diagnosed later because they may grow quietly for a long time without causing obvious symptoms until they press against a surrounding organ.

              Common Symptoms of NETs

              Because NETs can grow anywhere and may or may not produce hormones, symptoms vary widely from person to person. Many symptoms mimic more common conditions, like Irritable Bowel Syndrome (IBS), asthma, or menopause.

              Hormone-related symptoms (often associated with Functional NETs) include:

              • Flushing: Sudden redness, warmth, or a burning sensation in the face and neck.

              • Diarrhoea: Frequent, watery bowel movements that are often severe and unpredictable.

              • Wheezing or Breathlessness: Similar to asthma symptoms, often caused by lung NETs or specific hormone releases.

              • Rapid Heartbeat: Palpitations or a racing pulse.

              Physical or growth-related symptoms (often associated with Non-Functional NETs) include:

              • Unexplained weight loss

              • Persistent abdominal pain or discomfort

              • A feeling of fullness or a lump in the abdomen

              • Fatigue and a general feeling of being unwell

                  Where Do NETs Typically Develop?

                  Neuroendocrine tumours are named after the part of the body where they first start growing (the primary site):

                  1. Gastrointestinal (GI) NETs: The most common site, typically found in the small intestine, appendix, large bowel, or stomach. They often affect digestion.
                  2. Pancreatic NETs (pNETs): These develop in the pancreas. They can be functional (releasing hormones like insulin or gastrin) or non-functional.
                  3. Lung NETs: These develop in the bronchial tubes of the lungs and can sometimes be mistaken for other respiratory issues.
                  4. Unknown Primary: Sometimes, a neuroendocrine tumour is found after it has spread to another part of the body (such as the liver), but the original source remains hidden.

                    Diagnosis and Staging

                    Diagnosing a neuroendocrine tumour requires a highly detailed, multi-step approach. Because these tumours are rare and complex, our specialized MDT team utilizes a combination of advanced diagnostic tools to map out the exact nature of the cancer:

                    • Blood and Urine Tests: To look for specific chemical markers or hormones, such as Chromogranin A (CgA) or 5-HIAA (a breakdown product of serotonin).

                    • Advanced Imaging (CT and MRI scans): To locate the exact size and position of the tumour.

                    • Molecular Imaging (PET/CT Scans): Specialized nuclear medicine scans, such as Gallium-68 DOTATATE PET scans, which are highly sensitive at pinpointing where neuroendocrine cells are hiding.

                    • Biopsy: A small tissue sample taken to check the “grade” of the tumour—helping us understand how slowly or quickly the cells are growing.

                      Treating Neuroendocrine Cancer

                      Treatment for NETs is highly individualized. Because many NETs grow very slowly, treatment is often focused on controlling the cancer, managing symptoms, and ensuring you maintain an excellent quality of life.

                      Depending on your specific diagnosis, your ESNEFT Multi-Disciplinary Team may recommend:

                      • Surgery: To remove the tumour entirely, which can often cure early-stage NETs.

                      • Somatostatin Analogues (SSAs): Monthly injections (such as Lanreotide or Sandostatin LAR) that stop functional tumours from making too many hormones and can help slow down tumour growth.

                      • Targeted Molecular Therapy (PRRT): Advanced radionuclide treatments, including our newly offered Lutetium-177 therapy at Colchester Hospital, for tumors that need more advanced intervention.

                      • Targeted Therapies & Chemotherapy: Oral tablets or intravenous treatments designed to block the pathways that allow cancer cells to grow.

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