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 develop from neuroendocrine cells, which have the unique function of producing hormones that regulate various bodily functions.
These tumours can arise in different parts of the body, including the pancreas, lungs, and gastrointestinal tract. However, they can also affect bone health both before diagnosis and during treatment. NETs can vary significantly in their behaviour and impact on the body, with some tumours secreting hormones that can cause a range of symptoms, including those that affect bone health.
Although NETs are relatively rare, they have been increasing in incidence, affecting approximately 18 per 100,000 people annually in Australia.
Neuroendocrine Cancer Australia (NECA), is dedicated to supporting 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 NETs can engage with NECA’s comprehensive support and information by calling the NET nurse line.
The hormonal activity associated with NETs can have a direct impact on bone health. There are a range of bioactive substances that can interfere with normal bone metabolism, including:
Fluctuations in these can potentially lead to weakened bones and an increased risk of fractures.
In addition, some treatments for NETs can further contribute to bone density loss and other skeletal issues.
Understanding how different causes and factors affect bone health is crucial for managing the long-term wellbeing of NET patients.
Hormonal imbalances caused by NETs can negatively impact bone density.
For example, excess cortisol production, seen in some NET patients with Cushing’s syndrome, can lead to osteoporosis—a condition where bones become weak and brittle.
Similarly, serotonin, which is commonly overproduced in carcinoid syndrome, can inhibit bone formation and reduce bone density.
Chemotherapy can disrupt the normal turnover of bone cells, leading to a decrease in bone density over time.
There are also indirect systemic effects of chemotherapy, which can lead to:
Bone metastasis is another serious concern for NET patients. When NETs spread to the bones, they can cause a range of complications, including:
Bone metastases are less common in NETs compared to other cancers. However, when they do occur, they significantly affect the patient’s quality of life. The presence of bone metastasis requires specialised treatment strategies to manage pain and maintain bone integrity.
There are a range of common bone health issues that can affect NET patients. NET patients are at an elevated risk for these conditions due to hormonal imbalances and treatment-related side effects.
Osteopenia is characterised by lower-than-normal bone density, which can progress to osteoporosis if not managed effectively.
Osteoporosis is a more severe case, that significantly increases the risk of fractures, particularly in the spine, hips, and wrists.
Bone pain and fractures are frequent complications for NET patients, especially those with bone metastases or advanced osteoporosis. Pain can range from mild to severe and may significantly impact daily activities and overall quality of life.
Fractures, even minor ones, can lead to prolonged immobility and complications such as deep vein thrombosis (DVT) or pneumonia in older patients.
Spinal compression fractures are a specific concern for NET patients with weakened bones. These fractures can occur with minimal trauma or even spontaneously, leading to back pain, reduced height, and mobility issues.
Severe cases may result in spinal cord compression, which can cause:
Early detection and diagnosis of bone-related NET issues are crucial in helping patients and their care teams manage them. A swift response gives the best possible chance for a positive outcome.
Here are some of the most common diagnostic methods for identifying bone health issues arising alongside NETs.
Imaging studies, including X-rays, MRI, and CT scans, are essential for assessing bone health in NET patients.
These imaging studies are invaluable for planning treatment and monitoring the response to therapy.
Blood tests can provide important information about bone health in NET patients.
Monitoring these markers allows healthcare providers to adjust treatment plans as needed to optimise bone strength and reduce fracture risk.
Fortunately, following diagnosis, bone health can be treated alongside other symptoms of NETs. Let’s discuss some of the main medical, hormonal, and pain management treatments, alongside dietary modifications and other holistic strategies.
Bisphosphonates are a class of medications commonly used to treat osteoporosis in NET patients with bone metastases. They work by slowing down the rate at which cells break down bone, helping to maintain bone density and reduce the risk of fractures.
Examples include
Hormone therapy can play a role in managing bone health for NET patients, particularly those with hormone-related bone density loss.
For example, patients with excess cortisol production may benefit from medications that block cortisol synthesis, helping to protect bone density.
Similarly, hormone replacement therapy may be considered for patients with significant hormone imbalances that affect bone health.
Pain management is a critical aspect of care for NET patients with bone health issues. Pain relief can be achieved through a combination of treatments, such as:
Surgical intervention may be necessary for patients with bone metastases causing intractable pain.
Diet plays a crucial role in maintaining bone health. NET patients should focus on a diet rich in calcium and vitamin D, including foods:
Reducing the intake of caffeine, alcohol, and foods high in salt can also help prevent calcium loss from bones.
Calcium and vitamin D are essential nutrients for bone health. NET patients, especially those on SSAs, may be at increased risk for deficiencies in these nutrients.
Calcium supplementation can help maintain bone density and reduce fracture risk.
It is important for patients to work with their healthcare provider to determine the appropriate dosage based on individual needs. Consulting with a nutritionist or dietitian can provide personalised dietary recommendations to support bone health.
Regular weight-bearing exercises, such as walking, jogging, and resistance training, are important for maintaining bone density and overall skeletal health. These activities help stimulate bone formation and improve muscle strength, which can reduce the risk of falls and fractures.
NET patients should aim for at least 30 minutes of moderate exercise most days of the week, tailored to their individual capabilities and medical conditions.
Physical therapy can be highly beneficial for NET patients with bone health issues, particularly those recovering from fractures or dealing with chronic pain.
Physical therapists can develop customised exercise programs to improve:
Rehabilitation exercises may include gentle stretching, resistance training, and balance exercises to reduce the risk of falls.
Chronic bone pain and mobility issues can significantly impact the quality of life for NET patients. Pain can interfere with daily activities, limit physical function, and lead to social isolation.
Coping with osteoporosis and fractures can be challenging for NET patients. The fear of falling or sustaining a fracture can lead to anxiety and reduced physical activity, further exacerbating bone loss.
Support resources, including patient education materials, support groups, and counselling services, are invaluable for NET patients and their caregivers. NeuroEndocrine Cancer Australia has a number of resources for patients at all stages.
Support groups are another invaluable resource. Connecting with others who understand the challenges of living with NETs and bone health issues can provide emotional support, practical advice, and a sense of community.
Further information and support for people diagnosed with NETs is available by calling the NECA NET nurse line.
