Condition
Neuroendocrine Tumours (NET)
What are NET?
This is a rare type of the tumour and can arise in many organs. It is characterised by its cells of origin which have the potential to secrete hormones. It may be benign or frankly cancerous. The often grow quite slowly but not always.
What are the symptoms of NET?
The symptoms of the NET depends on their location and whether or not they produce hormones. In the abdomen, they may arise in the pancreas or small bowel commonly. They can of course arise in any tissue. NET may cause tummy pain, obstruction of bowel or constipation. Sometimes, the NET secrete hormones (chemicals) in the blood in large amount, causing flushing, diarrhoea and abdominal cramps among other symptoms.
How are NET diagnosed and treated?
These are complex tumours for a variety of reasons and are best investigated and treated in hospitals experienced in treating these with dedicated teams. There are specific blood investigations requiring rigorous conditions to be met in the collection of samples, followed by specialised scans and biopsy. Mr Khan has special expertise in treating NET and has published leading articles. Coventry is one of the handful of “European Centre of Excellence” in the treatment of NET. This status is only attained by rigorous accreditation of facilities and expertise and by an international body.
Specialist centre
The Arden NET Centre at University Hospitals Coventry and Warwickshire is the regional specialist service for neuroendocrine tumours. It holds European Centre of Excellence accreditation from ENETS, and patients are referred to it through NHS pathways.
Charities and patient support
A diagnosis of a NET is uncommon, and many patients find it helpful to speak to people who understand the condition. The organisations below provide information and support to patients and families in the UK.
- Neuroendocrine Cancer UK — the national NET charity, formerly the NET Patient Foundation. It provides information, a telephone helpline and support groups.
- PLANETS Cancer Charity — funds patient support groups, innovative treatments and research for pancreatic, liver and neuroendocrine cancer.
- AMEND — support for patients and families affected by multiple endocrine neoplasia (MEN) syndromes, which can give rise to pancreatic and other neuroendocrine tumours.
- Macmillan Cancer Support — practical, financial and emotional support for anyone affected by cancer.
These are independent organisations. Their content is not controlled by this website, and listing them here is not a recommendation of any particular treatment.