Expand your NETwork campaign launched to increase awareness of slow growing cancers

14th November 2018

Leading NETs consultants from National Centre for Neuroendocrine Tumours at St. Vincent’s University Hospital (SVUH) support launch of the new campaign “Expand Your NETwork” to help raise awareness of NETs. The campaign aims to raise awareness of this group of rare slow growing cancers and will focus on real stories told by people living with NETs. (Neuroendocrine Tumours)

 Speaking at the launch of the campaign, Consultant Endocrinologist Dr. Rachel Crowley from the National Centre for Neuroendocrine Tumours in St. Vincent’s University Hospital said:

“NET is a rare condition, and, like many rare conditions, it is hard to diagnose initially. Someone living with NETs 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.”

“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. In medicine, we assume that the most common, not rare, diagnosis is the correct one, hence the phrase, ‘If you hear hoofbeats, think zebras, not horses.’ That’s why the international symbol for NET Cancer Day is the zebra, reminding us that sometimes we need to look beyond the obvious.”

“NET can be managed successfully for a number of years with the right care. Once a person has been diagnosed with the condition they should be referred to a specialist multidisciplinary team.”

NET cancer is 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.¹ 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.²

 Mark McDonnell from Lucan, Co Dublin, was diagnosed with NETs in 2011. Mark, one of the ‘Expand Your NETwork’ campaign ambassadors and the chairman of NET Patient Network, explains what it is like to live with this rare type of cancer:

“Like many people with NETs, it took quite a while before I was eventually diagnosed. When I was eventually given the news, it was a very frightening time. Tumours were found on my liver, these were metastases, with the main tumour in my small bowel. I was referred to the NET clinic in St Vincent’s. I had 12 tumours removed from my liver, then six weeks later, more surgery to remove the last tumour on my liver. In total I had 65% of my liver removed and parts of my small bowel. Thankfully now I am tumour free.

“The diagnosis had a huge impact on my life. Myself and my wife had many difficult conversations, trying to plan for all possible outcomes, while still playing it down for the kids who were quite young at the time. Physically it took me a year to recover from the surgery, I felt it was difficult to get back to being myself. Meeting other people with the condition through NET Patient Network made all the difference. You need to talk to other people with the condition, sharing your story with people who understand what you are going through is very important for your wellbeing. I always worked very hard, but after my diagnosis my priorities changed. I used to live to work, now I work to live.”

 In 2013, St. Vincent’s University Hospital established The National Centre for Neuroendocrine Tumours (NET) to provide the highest standard of care and expertise to patients with Neuroendocrine Tumours (NETs), associate centres are also in operation in Mercy University Hospital Cork and University Hospital Galway. St Vincent’s University Hospital in Dublin was recognised and awarded a Centre of Excellence certificate for NETs in 2017.

For more information about the ‘Expand Your NETwork’ campaign, please visit: http://netpatientnetwork.ie/

Ends.

References

1. Overview, Medical Info, NET Patient Network, http://netpatientnetwork.ie/index.php/overview/ [Accessed on 19.10.2018]
2. Diagnosis, Medical Info, NET Patient Network, http://netpatientnetwork.ie/index.php/diagnosis/ [Accessed on 19.10.2018]