Understanding neuroendocrine tumours

Diving into neuroendocrine tumours (NETs), we find a complex group of cancers originating from scattered endocrine cells. Although often symptomless, they can occasionally cause hormonal disturbances. Commonly located in the gastrointestinal tract, pancreas, and lungs, NETs are more prevalent than commonly believed, outnumbering cancers like gastric carcinoma and myeloma. In his latest online article, Professor Martyn Caplin gives us his insights.

What are the neuroendocrine tumours and where do they typically occur in the body?

Neuroendocrine tumours originate from endocrine cells, which can be located throughout the body, most commonly in the gastrointestinal tract, pancreas, and lungs. These tumours often present without any symptoms, but sometimes they can cause hormonal symptoms like flushing and diarrhoea. Interestingly, although they are often considered rare, neuroendocrine tumours are actually more common than gastric cancer and conditions like myeloma, making them not as rare as many people believe.

What are the common symptoms of this condition and how are they diagnosed?

Common symptoms of neuroendocrine tumours include flushing and diarrhoea, but they can also manifest as abdominal pain or other non-specific symptoms. Diagnosis involves special blood tests and a PET scan called a gallium-68 octreotide scan, which is one of the most sensitive methods for detecting these tumours. However, this scan is not available at all centres. At the Wellington Hospital and the Royal Free Hospital, both of which are specialist centres, we offer these gallium-68 octreotide PET scans. Additionally, we use standard CT and MRI scans for diagnosis.

What treatments options are available for this condition and what factors influence the choice of treatments?

Regarding the available treatment options, it is important to note that all patients are discussed in our multidisciplinary tumour board from the outset. Many patients may receive a monthly anti-hormonal injection such as octreotide or lanreotide. Additionally, they might be prescribed tablets that inhibit the enzymes promoting tumour growth. A cutting-edge treatment option is PRRT (peptide receptor radionuclide therapy) with lutetium-177 Dotatate, a targeted radioactive therapy that specifically attacks tumour cells. Chemotherapy is used occasionally, many of our patients also participate in research trials.

What is the outlook for individuals diagnosed with this condition and what support resources are available for them?

The outlook for patients with neuroendocrine tumours is generally very positive. Since I began working in this field over 20 years ago, we have more than doubled the survival time for patients. Many patients with slow-growing tumours can expect to live for many years, often transitioning from one treatment to another. Maintaining a good quality of life is a key focus. Our patients receive support from specialist nurses, and we also connect them with the Neuroendocrine Cancer Foundation, where I serve as a patron, to provide additional information and support as needed.

Professor Martyn Caplin is an esteemed gastroenterologist. You can schedule an appointment with Professor Caplin on his Top Doctors profile.