Neuroendocrine tumours (NETs) are a rare and complex group of cancers that arise from neuroendocrine cells, which are responsible for producing hormones and peptides. One of the most debilitating symptoms experienced by NET patients is fatigue and weakness.
These symptoms can significantly impact a patient’s quality of life, making it essential to understand their causes, diagnosis, and management.
This article explores the multifaceted nature of fatigue and weakness in NET patients, aiming to provide a comprehensive overview for patients and healthcare providers alike.
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.
While NETs and their symptoms can be difficult to pin down, there are some well-documented causes of fatigue and weakness in NET patients that can be understood.
Hormonal imbalances are a primary cause of fatigue in patients with neuroendocrine cancer. NETs secrete various hormones and peptides in abnormal amounts, such as serotonin, insulin, VIP (vasoactive intestinal polypeptide) and gastrin. This hormonal dysregulation can disrupt the body’s normal metabolic processes, leading to profound fatigue and weakness.
For example, excess serotonin can cause carcinoid syndrome, which is characterised by severe diarrhoea and malabsorption, leading to dehydration and nutrient deficiencies that contribute to fatigue.
NETs can alter the body’s metabolism in several ways. These tumours can increase the metabolic rate, leading to rapid weight loss and muscle wasting. Additionally, the hypermetabolic state induced by NETs can cause an increased demand for energy, which the body may struggle to meet, resulting in persistent fatigue and muscle weakness.
Nutritional deficiencies are common in NET patients due to the impact of the tumours on the digestive system. Malabsorption of essential nutrients such as vitamins B12, D, and iron can occur, leading to anaemia and muscle weakness.
Treatments for NETs, including surgery, chemotherapy, and radiation therapy, can also cause significant fatigue and weakness.
While the manifestations of NET-induced fatigue might seem simple, they actually extend beyond the physical. Patients often report a raft of symptoms related to fatigue, including weakness and cognitive and emotional tiredness, all of which have an impact on daily life.
Physical fatigue in NET patients is characterised by a persistent sense of tiredness that is not relieved by rest. Patients often report feeling exhausted after minimal physical activity, and this fatigue can interfere with daily tasks and responsibilities.
Muscle weakness is another common symptom in NET patients. This weakness can affect various muscle groups, making it difficult to perform routine activities such as climbing stairs, lifting objects, or even walking. The severity of muscle weakness can vary, but it often correlates with the extent of the disease and the side effects of treatment.
Fatigue in NET patients is not limited to the physical realm; cognitive and emotional fatigue are also prevalent. Patients may experience difficulty concentrating, memory problems, and a sense of mental exhaustion. Emotional fatigue can manifest as irritability, depression, and a lack of motivation, further impacting a patient’s overall well-being.
The combined effects of physical, cognitive, and emotional fatigue can significantly impair a patient’s ability to engage in daily activities. Tasks that were once routine may become overwhelming, leading to a reduced quality of life.
Activities such as work, social engagements, and even self-care can be affected, requiring adjustments in lifestyle and support from caregivers.
Like understanding symptoms, diagnosis and evaluation can also pose clinical challenges when evaluating fatigue as a result of NETs. Always trust your healthcare team to follow the correct steps to give you the most accurate outlook of your condition.
A thorough clinical assessment is crucial for diagnosing the causes of fatigue and weakness in NET patients. This includes a detailed medical history, focusing on the onset and progression of symptoms, as well as a physical examination to identify any signs of muscle wasting or other physical abnormalities.
Laboratory tests play a vital role in diagnosing the underlying causes of fatigue and weakness. These tests may include:
Imaging studies, such as CT scans, MRIs, and PET scans, are essential for evaluating the extent of the disease and identifying any metastases that may contribute to fatigue and weakness. These studies can also help in planning appropriate treatment strategies.
Patient-reported outcome measures (PROMs) are valuable tools for assessing the impact of fatigue and weakness on a patient’s quality of life. These measures include questionnaires and scales that patients complete, providing insights into the severity of symptoms and their effect on daily activities.
Fortunately, there are ways for patients to manage the fatigue and weakness associated with NETs.
Hormone therapy aims to regulate the production of hormones that contribute to fatigue and weakness. For example, somatostatin analogs like octreotide and lanreotide can help control the secretion of hormones in patients with NETs, reducing symptoms such as diarrhoea and flushing, which can exacerbate fatigue.
Dietary modifications are essential for addressing nutritional deficiencies that contribute to fatigue and weakness. A well-balanced diet rich in vitamins, minerals, and proteins can help improve energy levels and overall health. Patients should work with a nutritionist to develop a personalised meal plan that meets their specific needs.
Some dietary choices can exacerbate symptoms of carcinoid syndrome therefore keeping a diary on food and symptoms may assist with modifying diet and assisting with fatigue.
Contact our NET Nurse to find out if you are eligible for appointments with a NET Dietician.
Supplementation may be necessary to correct deficiencies in vitamins and minerals, including niacin deficiency. Common supplements for NET patients include vitamin B12, vitamin D, iron, and omega-3 fatty acids. These supplements can help improve energy levels, muscle strength, and cognitive function. Supplements should only be taken when advised by a healthcare professional.
Exercise programs tailored to the needs of NET patients can help improve muscle strength, endurance, and overall fitness. These programs should include aerobic exercises, strength training, and flexibility exercises.
Energy conservation techniques can help patients manage fatigue and optimise their energy levels. These techniques include pacing activities, taking regular breaks, and prioritising tasks to avoid overexertion. Occupational therapists can provide guidance on how to implement these strategies effectively.
Counselling and support groups are invaluable resources for NET patients dealing with fatigue and weakness. Talking to a mental health professional can help patients address emotional fatigue, develop coping strategies, and improve their overall mental well-being.
Support groups provide a platform for patients to share experiences and receive encouragement from others facing similar challenges.
Stress management strategies, such as mindfulness meditation, yoga, and deep breathing exercises, can help reduce emotional fatigue and improve overall quality of life. These practices can also enhance physical health by reducing stress-related symptoms and promoting relaxation.
The physical and emotional effects of fatigue and weakness in NET patients can be profound.
Improving the quality of life for NET patients requires a collaborative and multifaceted approach that addresses both physical and emotional well-being. Strategies include:
Access to support resources is crucial for both patients and caregivers. These resources can provide information, practical advice, and emotional support. Some valuable resources include:
Research on fatigue and weakness in NET patients is ongoing, with studies focusing on understanding the underlying mechanisms, improving diagnostic methods, and developing effective treatments. These studies aim to enhance the quality of life for NET patients by addressing the root causes of fatigue and weakness.
Understanding the complexities of fatigue and weakness in neuroendocrine cancer is essential for providing comprehensive care to patients. Through a combination of medical treatments, nutritional support, physical therapy, and psychological support, patients can manage these debilitating symptoms and improve their overall quality of life.
Further information and support for people diagnosed with NETs is available by calling the NECA NET nurse line.
