Importance of symptom management in NETs
Neuroendocrine tumours (NETs) can present with a wide range of symptoms that impact patients’ quality of life, daily function, and emotional wellbeing. While tumour control is a central goal of treatment, managing symptoms is equally important.
Effective symptom management can reduce pain, control hormonal effects, prevent complications, and allow patients to live fuller, more independent lives.
Let’s explore the key strategies used to manage symptoms in NET patients, from somatostatin analogues and interferon therapy to targeted symptom control for carcinoid syndrome and acute crises.
NeuroEndocrine Cancer Australia (NECA), is dedicated to assisting individuals diagnosed with NETs, and their families. NECA offers a wealth of resources, educational programs, and advocacy efforts aimed at deepening the understanding of NETs, improving patient care, and encouraging research advancements. Patients diagnosed with neuroendocrine cancer can engage with NECA’s comprehensive support and information by calling the NET nurse line.
The impact of hormone-related and tumour-related symptoms
NETs are unique in that many of them secrete hormones or bioactive amines, which can lead to systemic symptoms beyond the effects of tumour growth. Common hormone-related symptoms include diarrhoea, flushing, wheezing, palpitations, and, in some cases, severe electrolyte disturbances or hypoglycaemia. Tumour-related symptoms often stem from mass effect, such as bowel obstruction, abdominal pain, or pressure on nearby structures.
Uncontrolled symptoms can lead to hospitalisations, malnutrition, anxiety, and social withdrawal. For example, persistent diarrhoea may cause dehydration and weight loss, while uncontrolled carcinoid syndrome can damage heart valves over time. Early recognition and treatment of symptoms can prevent these complications, improve physical comfort, and preserve organ function.
Goals of medical therapy in improving quality of life
The primary goal of medical therapy in NET symptom management is to reduce or eliminate symptoms while minimising treatment-related side effects. This involves not only controlling hormone secretion but also managing tumour burden and its effects. Additional objectives include:
- Preventing long-term complications such as carcinoid heart disease or malabsorption.
- Optimising nutrition and energy levels to help patients maintain weight and strength.
- Supporting psychological wellbeing by reducing symptoms and improving quality of life.
- Facilitating other treatments such as surgery or PRRT by stabilising hormone levels and reducing procedural risks.
Symptom management should be individualised, reviewed regularly, and integrated into the overall treatment plan.
Somatostatin analogues (SSAs)
Mechanism of action in controlling hormone secretion
Somatostatin is a naturally occurring hormone that inhibits the release of many other hormones. Synthetic somatostatin analogues (SSAs), such as octreotide and lanreotide, are designed to mimic this effect and bind to somatostatin receptors on tumour cells. This action reduces the secretion of serotonin, gastrin, insulin, and other substances that drive hormone-related symptoms.
Commonly used agents and effectiveness
Octreotide and Lanreotide are the most widely used SSAs in Australia. These are generally given as monthly injections and have been shown to:
- Reduce diarrhoea and flushing in up to 70 per cent of patients with carcinoid syndrome.
- Stabilise tumour growth in many cases, prolonging progression-free survival.
- Improve quality of life scores by reducing the frequency of symptom episodes.
Side effects are usually mild and may include injection site discomfort, gallstone formation, or mild gastrointestinal upset. Dose escalation, reduction, or switching between SSAs may be needed if symptoms are not fully controlled.
Targeted symptom control with interferon therapy
Role in reducing hormone-related symptoms
Interferon-alpha has immunomodulatory and antiproliferative effects and can be used as a second-line therapy when SSAs are not sufficient. It is particularly helpful in controlling serotonin secretion and reducing flushing and diarrhoea.
Limitations and side effects
While effective, interferon therapy can be associated with fatigue, flu-like symptoms, depression, and thyroid dysfunction. Its use is generally reserved for patients with refractory symptoms or those who are not candidates for other systemic treatments. Careful monitoring is required, and shared decision-making is essential to weigh benefits against potential impact on quality of life.
Symptom management in carcinoid syndrome
Carcinoid syndrome is one of the most recognisable manifestations of functional NETs and is caused by excessive serotonin release. Uncontrolled carcinoid syndrome can lead to diarrhoea, flushing, bronchospasm, and eventually carcinoid heart disease.
Therapies for flushing, diarrhoea, and wheezing
- Somatostatin analogues remain first-line therapy.
- Telotristat ethyl, a tryptophan hydroxylase inhibitor, can be added for patients with uncontrolled diarrhoea despite SSA treatment. It reduces serotonin production at the source. As of October 2025, this is currently not available on the PBS in Australia.
- Antidiarrhoeal medications such as loperamide or codeine phosphate may be used as supportive therapy.
- Antihistamines and corticosteroids may occasionally be prescribed for severe flushing.
- Bronchodilators can be used for wheezing and bronchospasm.
Use supportive medications
Supportive medications such as bile acid sequestrants may also be used if diarrhoea is related to short bowel syndrome after surgery.
Pain and gastrointestinal symptom relief
Medications for abdominal pain, nausea, and motility issues
Abdominal pain may result from mesenteric fibrosis, tumour pressure, or bowel obstruction. Pain management often includes:
- Paracetamol and NSAIDs for mild pain.
- Opioids for severe pain, used carefully to avoid worsening bowel motility issues.
- Antispasmodics to relieve cramping.
- Prokinetic agents to improve gut motility in selected cases.
- Antiemetics such as ondansetron or metoclopramide for nausea.
Supportive care in chronic symptom management
Nutritional support is critical, as many patients experience malabsorption. A dietitian may recommend small, frequent meals, pancreatic enzyme replacement, or vitamin supplementation. Psychological support, physiotherapy, and fatigue management strategies are also key components of holistic symptom care.
Managing hormonal crises and acute symptoms
Preventing carcinoid crisis during procedures
Carcinoid crisis is a potentially life-threatening complication characterised by sudden flushing, hypotension, hypertension, bronchospasm, and arrhythmias. It can be triggered by surgery, anaesthesia, or invasive procedures. Preventive measures include:
- Administering high-dose intravenous octreotide before and during procedures.
- Avoiding drugs that provoke histamine release.
- Ensuring anaesthesia teams are aware of the risk and have resuscitation measures ready.
Emergency interventions
In an acute crisis, rapid administration of intravenous octreotide, fluids, and vasopressors is critical. Management should be carried out in a setting where airway support and cardiovascular monitoring are available.
Integrating symptom control with overall care
Combining medical therapies with surgery, PRRT, or systemic treatments
Symptom control should not occur in isolation. Ideally, it is integrated with the overall treatment strategy. For example:
- Stabilising hormone levels with SSAs before surgery can reduce perioperative complications.
- Controlling symptoms allows patients to better tolerate systemic treatments such as PRRT, chemotherapy, or targeted therapies.
- Multidisciplinary team discussions ensure that symptom management aligns with the patient’s treatment goals.
Patient monitoring and adjustments over time
Symptom management is an ongoing process. Regular review of hormone levels, imaging, and patient-reported outcomes helps clinicians adjust therapy as needed. Some patients may need higher SSA doses over time, while others may benefit from switching to a different agent or adding new treatments. Education empowers patients to recognise changes in symptoms early and seek help before complications develop.
Symptom management is a cornerstone of care for people living with neuroendocrine tumours. By controlling hormone secretion, reducing tumour burden, preventing complications, and supporting overall wellbeing, these strategies help patients maintain independence and quality of life. The best outcomes occur when symptom management is delivered as part of a coordinated, multidisciplinary approach that adapts over time to meet the patient’s changing needs.
As research continues, new treatments are emerging that offer even greater precision in controlling hormone-related symptoms, promising a future where living with NETs is more manageable and less disruptive.
Further information and support for people diagnosed with NETs is available by calling the NECA NET nurse line.
SOURCES
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