Campaign to raise awareness of rare cancer that killed Aretha Franklin and

Soul singer Aretha Franklin

Soul singer Aretha Franklin

Image: Hallhuber/Davids/Ropi/PA Images

A NEW CAMPAIGN has been launched to raise awareness about a group of rare slow-growing cancers, Neuroendocrine Tumours – or NETs.

Earlier this week, the Expand Your NETwork campaign was launched ahead of NET Cancer Day today. 

These cancers are formed in the diffuse neuroendocrine system, which is made up of neuroendocrine cells found in the respiratory and digestive tracts as well as the endocrine glands; the pancreas, thyroid, pituitary, and the ovaries and testes.

There are a number of different types of NET, all with varying symptoms, the onset of which can take an average of five to seven years, says Dr Rachel Crowley from the National Centre for Neuroendocrine Tumours at St Vincent’s University Hospital in Dublin. 

A person living with NETs – the same group of cancers that Aretha Franklin and Steve Jobs had – could be misdiagnosed for a period of three to seven years, meaning that by the time the condition is detected it has already spread to other parts of the body.

The problem – both for patients and medical professionals – is that NET is a rare condition, and, like many rare conditions, it is hard to initially diagnose, says Crowley. 

It can also be misdiagnosed. 

Misdiagnosis can be attributed to the fact that many physicians will have never come across NET before, and that the symptoms are often mistaken for common conditions like IBS or other digestive disorders, says Crowley.

“There isn’t a clear message to send out to doctors. That is why it’s challenging.”

‘If you hear hoof beats’

The international symbol for NET Cancer Day is the zebra, reminding people to look beyond the obvious.

“In medicine, we assume that the most common, not rare, diagnosis is the correct one, hence the phrase, ‘If you hear hoof beats, think zebras, not horses’,” says Crowley. 

The Expand Your NETwork campaign, while aiming to raise awareness about NETs, is as much about reassuring medical professionals that there is expertise available about these rare slow-growing cancers.

NETs can be managed successfully for a number of years with the right care and once a person has been diagnosed with the condition they should be referred to a specialist multidisciplinary team.

There is an internationally accredited centre for NETs at St Vincent’s Hospital, says Crowley, with satellite centres at University Hospital Galway and Mercy University Hospital in Cork.