Neuroendocrine tumours

Dr Rachelle Steyn goes into detail about neuroendocrine tumours and the new support group, NETSAS, that has recently formed.

Neuroendocrine tumours, also known as carcinoid cancer, are rare cancers that begin in cells called neuroendocrine cells. These cells are specialised cells that secrete hormones in our bodies to keep them working normally. 

Neuroendocrine cells are present throughout the body. Therefore, a neuroendocrine tumour can occur anywhere in the body. Most occur in the lungs, appendix, small intestine, rectum and pancreas. 

Some neuroendocrine tumours grow slowly and others grow very quickly. Some secrete lots of hormones (functional) and some don’t secrete hormones at all (non-functional). 

Late diagnosis

Diagnosis and treatment is complex and depends on the type of tumour, its location, whether it produces hormones, how fast it grows and whether it has spread to other parts of the body. 

Due to the rarity of the disease there is often a long period between the onset of symptoms and diagnosis. 

A recent web-based survey, in the UK, demonstrated an average time of 53,8 months from onset of symptoms to diagnosis. 

Eighty percent of the patients who participated in the survey visited their GPs 11 times on average before the diagnosis was finally made. 

Patients who were referred from their GPs to specialists were subject to an average of three specialist visits before the diagnosis was made.¹

Symptoms

Depending on the type of neuroendocrine tumour, patients may experience the following symptoms:²

• General cancer symptoms: feeling tired, loss of appetite or weight loss.
• Symptoms related to the tumour size or location: pain, lump/thickening, nausea or vomiting, change in bowel or bladder habits, unusual bleeding or discharge, jaundice (yellowing of the skin and whites of the eyes).
• Symptoms related to the production of hormones in the case of functional neuroendocrine tumours: diarrhoea, cough, flushing, high or low blood glucose levels, heartburn or stomach ulcers. 

Diagnosis

The diagnosis is usually made with blood and urine tests which may show abnormal levels of hormones as well as endoscopy, X-ray, ultrasound, CT or nuclear medicine scans. 

Once the diagnosis is made, patients are faced with the challenge of finding the right specialists to treat their disease. 

Due to the complexity of the neuroendocrine tumour disease process treatment, options for patients should be individualised and discussed by a multi-disciplinary team of specialists who are dedicated to and established in treating patients with neuroendocrine tumours. 

Finding the right multi-disciplinary team, information on various treatment options and psychosocial support throughout this process is yet another challenge that patients with neuroendocrine tumours face. 

NETSAS

Contrary to the rest of the world, no neuroendocrine tumour support group for patients in South Africa or Africa exists despite the desperate need for it. This has led to the formation of Neuroendocrine Tumour Southern Africa Support (NETSAS). 

The aim of NETSAS is to provide a voice for patients with neuroendocrine tumours and their cares in South Africa and Africa. 

It will, in addition, provide a platform for raising awareness; educating on complexities surrounding diagnosis and treatment; support; and, most importantly, emphasise the importance of holistic care for patients.

2020 & 2021 MEETING DATES:

12 Dec; 23 Jan; 20 Feb; 20 Mar;17 April; 22 May; 19 June; 24 July 

Email [email protected] for more info.

References 

1. Delays and routes to diagnosis of neuroendocrine tumours. Ron Basuroy, Catherine Bouvier, John Keith Ramage, Maia Sissons& Raj Srirajaskanthan  BMC Cancer volume 18, Article number: 1122 (2018) 
2. https://www.cancer.net/cancer-types/neuroendocrine-tumors/symptoms-and-signs