Wednesday 26 June 2019

Helping spread the net in a bid to combat rare form of 'slow' cancer

Ballincollig woman serving as an ambassador for NETS campaign

Mary O’Brien and her husband, Eoin O’Leary.
Mary O’Brien and her husband, Eoin O’Leary.

Bill Browne

Real stories told by people, including a woman from Ballincollig who recently became a grandmother, are being used to raise awareness of a rare form of cancer that is often difficult to diagnose.

Next Saturday will see the launch of the 'Expand Your NETwork' initiative, a nationwide campaign aimed at awareness of Neuroendocrine Turmours (NETs), in advance of global NET Cancer Day on Saturday, November 10.

The campaign will focus on the experiences of those living with the condition, a slow-moving group of cancers which forms in cells found in the respiratory and digestive tracts, as well as the endocrine glands, pancreas, thyroid, pituitary, and the ovaries and testes. 

According to the NET Patient Network, a support group established in conjunction with Novartis, there are a number of varying types of NET, all with differing symptoms, the onset of which can take an average of five to seven years.

Expand Your NETwork ambassador Mary O'Brien from Ballincollig, who was diagnosed with NETs in 2013, explained what it is like to live with the condition.  Mary  (49) said that while she was only diagnosed six-and-a-half years ago, the reality was that she had been living with NETS for more than a decade.

"It is a very difficult condition to diagnose, and the fact that there is such low awareness of it amongst the general public and amongst healthcare professionals adds to the problem," said Mary.

"It took a very long time and a lot of tests to find out what was wrong with me, and at times I felt like a hypochondriac - until eventually I was officially diagnosed with NET, which is an incurable cancer."

In some ways, Mary said there was an initial sense of relief when she was diagnosed as she finally knew there was an explanation for the various health problems she had experienced since her mid-20s.

"However, I also felt very alone as I found it so difficult to get information about the condition. 

"When I joined the NET Patient Network, I was no longer alone. I was part of a network of people living well with this disease," said Mary.

Mary said the support of her family had been instrumental in helping her to come to terms with her condition and inspired her to run the NET Patient Network Facebook page along with her husband, Eoin O'Leary.

"It's important for me to be involved; I never want anyone else facing in to this diagnosis to feel the loneliness that I once felt," said Mary, who also has Carcinoid Syndrome, a life-threatening illness related to her NET diagnosis.

She said that as a result of this, simple things such as excessive walking or eating the wrong foods can make her condition worse. "But I am very happy to be here. My first grandchild was born recently. She is such a blessing, and I want to be as healthy as I can for her, for my family and for myself," said Mary.

"I would encourage anyone living with NETs to seek out the advice of a specialist consultant and to make sure to ask a lot of questions and get as informed as you can about the disease. Trust your instincts: if you don't feel well - seek professional help." 

Dr Derek Power, consultant medical oncologist at Cork's Mercy University Hospital Cork, said that because of its rarity, NETS can be 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," he said.

"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."

Net Patient Day in Cork

As part of the 'Expand Your NETwork' campaign, the NET Patient Network has invited people in Cork to attend their annual NET Patient Day event at UCC's Devere Hall on Saturday. The event aims to bring together people living with NETs, and their families, to learn from one another and leading specialists about the management of NETs in a relaxed informal setting.

Contact NET Patient Network by email on to register for the event. For more information about the 'Expand Your NETwork' campaign, please visit: