Neuroendocrine cancers (also known as NETs) are a group of less common cancers originating from neuroendocrine cells throughout the body. While not as common as some other cancer types, metastatic neuroendocrine cancer presents its own unique characteristics and challenges.
Metastatic neuroendocrine cancer has a significant impact on those diagnosed with it, and their families. With early detection, appropriate treatment, and a strong support system, individuals can navigate the challenges posed by metastatic NETs.
Every patient’s experience is unique, and there are dedicated medical professionals and support networks available to provide guidance, care, and compassion throughout this process.
On this page, we will delve into metastatic neuroendocrine cancer, offering information and support for those affected by this condition. If you have specific questions about your condition, you should consult your healthcare team or contact our NET Nurse.
Neuroendocrine cancer is cancer originating from specialised neuroendocrine cells found throughout the body, primarily in organs such as the lungs, pancreas, gastrointestinal tract, and adrenal glands. These cells play a vital role in regulating various physiological functions, including hormone secretion and nerve signalling.
When neuroendocrine tumours become cancerous and spread (metastasise) to other parts of the body, they are referred to as metastatic neuroendocrine cancer. The metastatic process involves cancer cells breaking away from the primary tumour and travelling through the bloodstream or lymphatic system to form secondary tumours in distant organs or tissues. The most common sites of metastasis for neuroendocrine tumours include the liver, lungs, and lymph nodes.
The exact causes of metastatic neuroendocrine cancer remain unknown. However, several risk factors have been identified that may increase the likelihood of developing these tumours:
Some individuals may have a genetic predisposition to neuroendocrine tumours due to certain hereditary conditions. Such as Multiple endocrine neoplasia types (MEN1 & 2), Von Hippel Lindau syndrome, medullary thyroid cancer (MTC).
60% of NET patients are Stage 4 at correct diagnosis.
Symptoms of metastatic neuroendocrine cancer can vary widely depending on the subtype and location of the tumour. Recognizing these symptoms early can lead to a prompt diagnosis and appropriate treatment. Common symptoms may include:
Diagnosing and staging metastatic neuroendocrine cancer is a meticulous process involving various medical assessments. The manner in which these are actioned will depend on the patient, their condition, and the location of the tumour.
Imaging studies involve taking imagery to assess the size and state of the tumour.
A biopsy is a medical procedure in which a sample of a metastatic neuroendocrine tumour is taken from a person’s body for examination and analysis. The purpose of a biopsy is to diagnose and stage the tumour.
Grading identifies the cell ‘s differentiation and rate of growth which assists treatment choice.
Staging helps determine the extent of the cancer’s spread and guides treatment decisions. The staging system for neuroendocrine cancer is covered extensively on our page on staging.
Surgical removal of the tumour, especially when it’s localised or causing symptoms. This is commonly done for gastrointestinal neuroendocrine tumours. In some cases, surgery may be used to remove as much of the tumour (debulking) as possible when it has spread to multiple areas. This is often combined with other treatments.
Medical therapies may be employed to assist in the management of a metastatic neuroendocrine tumour.
Like other medical therapies, radiation therapy may offer highly targeted treatment for metastatic neuroendocrine cancer.
Pain relief measures, including medications and other kinds of pain management, can significantly improve the quality of life for patients with metastatic neuroendocrine cancer.
Addressing specific symptoms such as diarrhoea, flushing, or hormonal imbalances can enhance comfort and well-being.
Dietary modifications and nutritional supplements may be recommended to manage digestive symptoms and maintain adequate nutrition.
Additionally, participation in clinical trials may offer access to novel therapies and contribute to advancing our understanding of metastatic neuroendocrine cancer and its treatment options.
To get the best possible results from treatment, it’s crucial for patients with metastatic neuroendocrine cancer to work closely with their healthcare team. This will help all parties determine the most appropriate treatment plan tailored to their specific circumstances.
Regular follow-up appointments and monitoring are essential to track the progress of the disease and make any necessary adjustments to the treatment plan.
A diagnosis of metastatic neuroendocrine cancer can be overwhelming, but it’s essential to remember that you’re not alone. Support from healthcare professionals, family, and friends is crucial during this journey. Here are some tips for living with metastatic neuroendocrine cancer:
Treatment options have expanded in recent years, offering patients a more extended and better quality of life. If you’re struggling with your diagnosis, numerous support options are available for you and your family.
Here are some key resources and organisations that can provide guidance and compassion to those affected by metastatic NETs:
Our organisation – Neuroendocrine Cancer Australia – is dedicated to assisting patients and carers as they manage neuroendocrine cancers, including metastatic NETs.
We offer a free, confidential telephone support and information line with a specialist NET nurse to answer any questions you might have. Our NET Nurse Hotline is accessible to all NET patients and their families, and you can attend the services in a variety of ways, including:
Consider joining or seeking out local support groups for NET patients. These groups often provide a safe space for sharing experiences, concerns, and advice with others who understand what you’re going through.
NECA also has a range of patient support groups established all over Australia. Here, patients can access local knowledge and support from peers who have been diagnosed with an NET before. Participants are more than happy to answer questions about their experiences with NETs and in the healthcare system.
Australia is at the forefront of clinical trial research, and there may be some available for metastatic neuroendocrine cancer treatment. Participating in a clinical trial can offer access to innovative therapies and the opportunity to contribute to advancements in cancer care.
Don’t underestimate the importance of emotional and psychological support from mental health professionals. Psychologists and counsellors can help you and your family cope with the emotional challenges that come with a metastatic neuroendocrine cancer diagnosis.
Remember that you’re not alone. Reach out to these support resources in Australia to access the information, assistance, and compassionate care you need to navigate the challenges of living with this rare condition. Your healthcare team can also provide guidance on available resources and support networks in your community.
