Neuroendocrine tumour patient video

A neuroendocrine tumour (NET) is a rare type of tumour that arises from neuroendocrine cells, which are found throughout the body. These cells can produce hormones, so NETs often release hormones into the bloodstream.

Symptoms vary depending on the tumour's location and the hormones it releases. Common symptoms include abdominal pain, flushing, diarrhoea, unexplained weight loss, and fatigue.

Diagnosis typically involves a combination of blood tests, imaging scans (such as CT or MRI), and biopsy procedures to confirm the presence and type of neuroendocrine tumour.

Treatment options can include surgery, medication to control symptoms, targeted therapies, chemotherapy, and radiotherapy. The choice of treatment depends on the type, location, and spread of the tumour.

No, surgery is not always necessary. It depends on factors such as the size, location, and spread of the tumour. Some patients may be managed with medication or other non-surgical treatments.

While some NETs can be cured, particularly if detected early and treated effectively, others may be managed as chronic conditions requiring ongoing treatment and follow-up.

Most NETs are not hereditary, but some rare genetic syndromes, such as Multiple Endocrine Neoplasia type 1 (MEN1), can increase the risk of developing these tumours.

Patients with NETs are usually managed by a multidisciplinary team including oncologists, endocrinologists, surgeons, radiologists, and specialised nurses.

Lifestyle changes that may help manage symptoms include eating a balanced diet, avoiding foods that trigger symptoms, staying hydrated, and maintaining a healthy weight. Regular follow-up with healthcare providers is also important.

NETs are considered rare, but their incidence is increasing. Approximately 5,000 people are diagnosed with NETs each year in the UK.

The prognosis varies widely depending on factors such as the type and stage of the tumour, the patient's overall health, and response to treatment. Early detection and treatment often lead to a better prognosis.

Yes, NET patients may have the opportunity to participate in clinical trials, which can provide access to new treatments and contribute to medical research. Patients should discuss trial options with their healthcare team.

Yes, there are several support groups and organisations in the UK such as the NET Patient Foundation that provide resources, information, and community support for individuals affected by NETs.

Hormone therapy can help manage symptoms by controlling the excessive production of hormones by the tumour. This type of treatment is often used in combination with other therapies.

Support can include being there for emotional support, helping with day-to-day tasks, attending medical appointments, and encouraging adherence to treatment plans. Understanding the condition and potential symptoms can also be beneficial.