Neuroendocrine tumours

Neuroendocrine tumours signs and symptoms

Most neuroendocrine tumours develop slowly over several years but they can also be aggressive and grow quickly, spreading to other parts of the body and causing problems.

In the early stages neuroendocrine tumours may not cause symptoms. If you do have symptoms, it will depend on where in the body the tumour is and if the tumour cells are producing hormones. You may experience general symptoms such as fatigue and loss of appetite.

Gastro-intestinal neuroendocrine tumours

Symptoms may include:

• abdominal (tummy) pain and bloating

• changes in bowel or bladder habits, including diarrhoea

• bowel obstruction or bleeding from the anus

• facial flushing and asthma-like wheezing

Pancreatic neuroendocrine tumours

Symptoms may include:

• low blood sugar levels (hypoglycaemia) causing shaking, sweating, confusion, dizziness and rapid heartbeat
• high blood sugar levels (hyperglycaemia) which may cause increased urination, excessive thirst and blurred vision
• indigestion (heartburn) and stomach ulcers
• rash in the groin area
• unexplained weight loss
• nausea or vomiting
• changes in bowel habits, including diarrhoea or pale, foul-smelling stools that are hard to flush away.

Lung

Symptoms may include:

• repeated pneumonia or chest infections
• coughing up blood
• shortness of breath; wheezing
• chest pain.

Merkel cell carcinoma

This usually occurs as a painless hard nodule (tumour) in the skin that grows rapidly and is often red, purple or blue, or can be flesh-coloured. Some patients feel the nodule is under (rather than in) the skin. The most common location is skin that has been exposed heavily to the sun such as the face, head and neck.

Neuroblastoma

Symptoms may include:

• painless lump or swelling in the tummy, chest or neck
• swollen legs, arms, upper chest, neck and face
• loss of appetite or feeling full
• weight loss
• changes in bowel or bladder habits
• difficulty breathing or swallowing
• headaches or dizziness
• drooping eyelid
• trouble feeling or moving arms and legs.

Causes of neuroendocrine tumours

The causes of most neuroendocrine tumours are not known. Some risk factors may include:

• genetic factors – some rare inherited diseases can put people at more risk of developing neuroendocrine tumours

• pre-existing conditions such as peptic ulcers or diabetes

Diagnosis of neuroendocrine tumours

Neuroendocrine tumours can be difficult to find and are sometimes diagnosed when patients are undergoing tests for a different condition.

If your doctor thinks that you may have a NET (or one of the syndromes associated with neuroendocrine tumours) they will take your medical history, perform a physical examination and carry out certain tests. If the results suggest that you may have a NET, your doctor will refer you to a specialist who will carry out further tests such as:

After a diagnosis of neuroendocrine tumours

After a diagnosis of less common cancer like neuroendocrine tumours you may feel upset, confused and anxious. These are normal reactions. Talk to your doctor, family and friends about your treatment options and seek as much information as you need.

To ensure you receive the best care, your specialist will arrange for a team of health professionals to plan your treatment based on your overall health, how far the cancer has spread and your preferences and needs.

Find out more about the best neuroendocrine tumours care:

What should happen next?

This resource can help guide you and your loved ones after your diagnosis. 

Guide to best care for neuroendocrine tumours 

Treatment for neuroendocrine tumours

Discussion with your doctor will help you decide on the best treatment for your tumour depending on the type of NET you have; the symptoms you have; where it is in your body; how far it has spread; your age, fitness and general health and your preferences.

The main treatment options for neuroendocrine tumours include surgery, chemotherapy, targeted therapy, theranostics – peptide receptor radionuclide therapy (PRRT) and drug therapy (to control any symptoms caused by extra hormones). Merkel cell carcinoma may also be treated using radiotherapy. Treatments can be given alone, in combination or one after the other. This is called multi-modality treatment. If the NET is slow-growing and not causing any symptoms you may not need immediate treatment.

Treatment Team

• GP (General Practitioner) -

  looks after your general health and works with your specialists to coordinate treatment.

• Surgeon -

  surgically removes tumours and performs some biopsies.

• Medical oncologist -

  prescribes and coordinates the course of chemotherapy.

• Radiation oncologist -

  prescribes and coordinates radiation therapy treatment.

• Nuclear medicine specialist -

  coordinates the delivery of radioactive scans and treatment.

• Gastroenterologist -

  specialises in diseases of the digestive system.

• Endocrinologist -

  diagnoses, treats and manages disorders of the endocrine (hormonal) system.

• Lung physician -

  specialises in treating and managing patients who have diseases of the lung.

• Cancer nurse -

  assists with treatment and provides information and support throughout your treatment.

• Dietitian -

  recommends an eating plan to follow while you are in treatment and recovery.

• Physiotherapist/occupational therapist -

  help with physical and practical problems such as restoring movement and mobility after treatment.

• Other allied health professionals -

  such as social workers, pharmacists, and counsellors

Screening for neuroendocrine tumours

There is currently no national screening program for neuroendocrine tumours available in Australia.

Preventing neuroendocrine tumours

As the causes of most neuroendocrine tumours are not understood there is no prevention advice specific to this disease.

Prognosis of neuroendocrine tumours

It is not possible for a doctor to predict the exact course of a disease, as it will depend on each person's individual circumstances. However, your doctor may give you a prognosis - the likely outcome of the disease - based on the test results, the rate of tumour growth, as well as your age, fitness and medical history.