Please note: NECA will be closed from Friday 22nd December, reopening on Monday 8th January
Neuroendocrine tumours (NETs) are a diverse group of cancers that originate from neuroendocrine cells, which have characteristics of both nerve and hormone-producing cells.
These tumours can affect various parts of the brain and body, including:
Although NETs are relatively uncommon, their incidence has been rising, with recent data showing that approximately 18 per 100,000 people are diagnosed with NETs annually in Australia.
The chronic nature of NETs, coupled with the unpredictability of symptoms, can place a considerable emotional and psychological burden on patients.
Neuroendocrine Cancer Australia (NECA), is dedicated to assisting individuals with neuroendocrine cancer 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 NETs can engage with NECA’s comprehensive support and information by calling the NET nurse line.
The physical symptoms of NETs, such as pain, fatigue, and gastrointestinal issues, are closely linked to a patient’s emotional and psychological well-being.
The chronic and often fluctuating nature of these symptoms can lead to significant stress, anxiety, and depression.
Understanding the connection between the body and brain is crucial for providing comprehensive care that addresses both the physical and emotional needs of NET patients.
Anxiety and stress are among the most common psychological challenges faced by NET patients. The uncertainty of living with a chronic illness, frequent medical appointments, and the fear of worsening symptoms can contribute to heightened anxiety.
Stress can also exacerbate physical symptoms, creating a vicious cycle that further impacts the patient’s overall wellbeing.
Depression is another significant psychological challenge for NET patients. The chronic nature of NETs, along with the potential for debilitating symptoms, can lead to feelings of hopelessness and despair.
Mood disorders can also be exacerbated by the hormonal imbalances often seen in NET patients, leading to a complex interplay of physical and emotional symptoms.
The fear of recurrence or disease progression is a constant concern for many NET patients. Even after successful treatment, the possibility of the tumour returning or spreading can create ongoing anxiety and fear.
This fear can affect a patient’s mental health, leading to hypervigilance, sleep disturbances, and a reduced quality of life. For some, this fear becomes overwhelming, making it difficult to enjoy life or plan for the future.
Body image issues and low self-esteem are common among NET patients, particularly those who have undergone surgery or experienced significant physical changes due to their illness.
Scarring, weight changes, and the visible effects of treatment can alter a patient’s perception of their body, leading to feelings of self-consciousness and reduced confidence. These changes can also impact a patient’s social life, leading to withdrawal and isolation.
NETs are diverse and widespread, and can impact the body in a number of ways depending on where the tumour is located. Unfortunately, this also means that a NET can affect the brain in different ways.
Chronic pain is a common symptom of NETs, particularly for those with metastatic disease or tumours that press on nerves or other structures. The persistent nature of this pain can lead to emotional exhaustion, depression, and anxiety.
Fatigue is another prevalent symptom in NET patients, often described as overwhelming and unrelenting. This fatigue can be both a direct result of the disease and a side effect of treatment.
The constant feeling of tiredness can lead to:
Gastrointestinal symptoms, such as diarrhoea, nausea, and abdominal pain, are common in NET patients, particularly those with carcinoid syndrome.
These symptoms can be unpredictable and debilitating, making it difficult for patients to maintain normal daily routines.
Hormonal imbalances are a hallmark of many NETs, particularly those that secrete excess hormones such as serotonin, insulin, or gastrin. These imbalances can lead to mood swings, irritability, and emotional instability.
For example, the overproduction of serotonin in carcinoid syndrome can contribute to anxiety and mood disturbances, while insulinomas, which produce excess insulin, can cause hypoglycemia, leading to confusion, irritability, and even panic attacks.
Fortunately, there are ways patients can cope with the emotional consequences of NETs. Here are some of the most effective strategies that we recommend to patients and their families.
Psychological therapies can be highly effective in helping NET patients cope with the challenges of their illness.
Cognitive behavioural therapy, or CBT, in particular, is a structured therapy that helps patients identify and change negative thought patterns that contribute to anxiety and depression.
Counselling provides a supportive environment where patients can explore their feelings, fears, and concerns with a trained professional.
Stress management techniques can help NET patients manage the anxiety and stress associated with their illness.
Mindfulness involves focusing on the present moment and accepting it without judgement, which can help patients reduce anxiety and improve emotional regulation.
Meditation practices can also promote relaxation, reduce stress, and enhance overall wellbeing.
Support groups and peer support can be invaluable resources for NET patients.
Connecting with others who are going through similar experiences can provide emotional support, reduce feelings of isolation, and offer practical advice for managing symptoms and treatment.
Support groups also provide a safe space for patients to share their fears and challenges, which can be incredibly therapeutic.
Family and Caregiver Support
The support of family and caregivers is crucial for NET patients.
Loved ones can provide practical help with daily tasks, emotional support during difficult times, and encouragement throughout the treatment process.
It’s also important for caregivers to receive support, as the emotional and physical demands of caregiving can lead to burnout and stress.
Healthcare providers are the first line of defence in diagnosis and treatment of NETs. Their scope of practice also extends to providing emotional and psychological care.
Healthcare providers play a critical role in the emotional and psychological wellbeing of NET patients.
A thorough psychosocial assessment should be a routine part of NET care, helping to identify patients who may be struggling with anxiety, depression, or other mental health issues.
An integrated care approach that addresses both the physical and emotional aspects of NETs is essential for comprehensive patient care.
This approach involves collaboration to create a holistic care plan that meets the patient’s needs. This takes place between
By addressing the emotional impact of NET symptoms alongside physical treatment, healthcare providers can help improve overall wellbeing and treatment outcomes.
Referrals to mental health specialists, such as psychologists or psychiatrists, should be made for NET patients who are experiencing significant emotional or psychological distress.
These specialists can provide targeted therapies, medication management, and other interventions to help patients cope with the challenges of living with NETs.
Coping strategies are in place to lessen the impact on quality of life for NET patients. It’s important to understand these changes and how they might affect you.
Balancing physical and emotional health is key to maintaining a good quality of life for NET patients.
This balance involves managing physical symptoms while also addressing the emotional and psychological challenges of living with a chronic illness.
Patients are encouraged to take an active role in their care, seeking support and using coping strategies that work for them.
Social isolation is a common issue for NET patients, particularly those who experience debilitating symptoms that limit their ability to participate in social activities.
Building and maintaining strong support systems, including family, friends, and peer groups, can help reduce feelings of isolation and provide a sense of community and belonging.
Maintaining a positive outlook can be challenging for NET patients, but it’s an important aspect of emotional wellbeing.
Focusing on the aspects of life that bring joy, practising gratitude, and setting realistic goals can help patients maintain hope and resilience in the face of their illness.
It’s also important to acknowledge and accept difficult emotions, as this can be a crucial step in the healing process.
Research into the psychological impact of NETs is ongoing, with new studies providing valuable insights into how these tumours affect mental health. Advances in this area are helping to improve the understanding of the complex relationship between NET symptoms and emotional wellbeing, leading to more effective interventions and support strategies.
Emerging therapies and interventions for emotional wellbeing in NET patients are being explored in clinical trials and research studies. These include new psychological therapies, stress reduction techniques, and integrative approaches that combine physical and emotional care. As the understanding of the psychological impact of NETs continues to grow, these emerging therapies hold promise for improving the overall quality of life for NET patients.
Further information and support for people diagnosed with NETs is available by calling the NECA NET nurse line.
