Former Tipperary teacher Tom O'Donoghue promoting awareness of rare cancer NET

NET Patient Network and Novartis hae announced the launch of the Expand Your NETwork campaign, which aims to raise awareness of Neuroendocrine Tumours (NETs), a group of rare slow growing cancers, and the impact they can have on a person’s quality of life.

The campaign will focus on real stories, told by people living with NETs, including Tipperary man Tom O’Donoghue, and has been launched in advance of the global NET Cancer Day, celebrated annually on 10th November.

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

Tom O’ Donoghue is a retired English teacher at Abbey CBS and self-confessed GAA fanatic and former GAA coach who lives in Tipperary Town with his wife.

Tom, one of the ‘Expand Your NETwork’ campaign ambassadors this year, was diagnosed with NETs in 2007:

“I was very fortunate in that I was diagnosed by accident. In 2007 I had surgery for a detached retina, which left one of my eyes very weak and gave way to double vision especially when tired. I told my GP about this, which prompted him to ask was I tired often. That was when I was sent for tests.

“I had never heard of NETs prior to my diagnosis, I knew nothing about it. My doctor said he was giving me the best worst news; the bad news being I had cancer, the good news was that it was manageable.

“I was sent to Sweden for treatment, at the time the treatment wasn’t available here, it is now, but wasn’t then. That is when I learned about the condition. Finally, I understood the fatigue I was enduring. Every single day I have to take a rest for a couple of hours. It’s hard to describe the fatigue, not only is it tiredness in your body, it’s in your head too.

“I know some people would say, why me? I would say, why not me. I believe in living the best I can with the time I have. I live in the now. I pray to have a good attitude and I pray for acceptance of my diagnosis.

“I have a great life and I have a great quality of life. Yes, there are things I can’t do; but I’m 72! There are things I couldn’t do when I was 22. If someone was recently diagnosed I would advise; get busy doing the things you love within the energy levels you have. Meet people who have the condition, talk, and be kind to those who are trying to support you.”

In 2013 St Vincent’s University Hospital established The National Centre for Neuroendocrine Tumours to provide the highest standard of care and expertise to patients with Neuroendocrine Tumours, 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.

Discussing the importance of a multidisciplinary team approach to care for people living with NETs, Dr Derek Power, Consultant Medical Oncologist, Mercy University Hospital Cork, said:

“NETs are a rare condition, and, like many rare conditions, it is hard to diagnose initially. Someone living with NETs could potentially be misdiagnosed for 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 NETs 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.

“NETs can be managed successfully for many years with appropriate care. Once a person has been diagnosed with the condition they should be referred to a specialist multidisciplinary team.”

As part of the campaign, NET Patient Network is also inviting all people in Tipperary living with NETs to attend their annual NET Patient Day event. People living with NETs and their families are invited to the annual NET Patient Day on Saturday 3rd November in the Devere Hall, University College Cork. The event aims to bring together people living with NETs, and their families, to learn from one another and leading NET specialists about the management of NETs in a relaxed informal setting. Contact NET Patient Network by email on info@netpatientnetwork.ie to register for the event.