Diagnosed with NET? Never feel like you are alone

Ahead of NET Cancer Day, which takes place tomorrow, November 10, Mary O’Brien from Ballincollig explains what it is like to live with this rare type of cancer
Diagnosed with NET? Never feel like you are alone
Mary O'Brien and her husband Eoin, who run the Facebook Support Group for NET Patient Network.

‘NETs’ stands for neuroendocrine tumours, and if you haven’t heard of it before you aren’t the only one. The first time I heard of it was after many years of searching for a diagnosis, an answer to the many health issues I had faced in my life — and it was a shock to find out that what I had, the ‘thing’ that had caused all these issues for me, was incurable.

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. 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. I was only diagnosed six and a half years ago, but the reality is that I have probably been living with NETs for over 10 years.

It is a very difficult condition to diagnose as it can be mistaken for other illnesses, and the fact that there is such low awareness of it amongst the general public and amongst healthcare professionals adds to the problem.

I was diagnosed with rheumatoid arthritis in my 30s, and I had also had a hysterectomy in my late 20s, so many of the symptoms I faced were masking the underlying issue, NETs.

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 they discovered several tumours in my lungs and I was officially diagnosed; NETs.

Mary O'Brien, who explains what life is like with a rare type of cancer.
Mary O'Brien, who explains what life is like with a rare type of cancer.

Thinking back to that day, it’s strange to describe my emotions at the time because there was an initial sense of relief for me when I was diagnosed; I finally knew what I had and that there was something responsible for the various health problems I had faced since my late 20s.

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

This all changed when I heard an interview with the journalist Tommie Gorman, who also lives with NETs. Tommie talked about a patient support group called the NET Patient Network. I decided to attend my first patient event in 2013 in St Vincent’s University Hospital, and I haven’t looked back.

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.

My husband Eoin and my family have been an amazing support to me, and Eoin and I run the Facebook Support Group for NET Patient Network together. It’s important for me to be involved — both my husband and I are now members of the NET Patient Network committee. I never want anyone else facing in to this diagnosis to feel the isolation and loneliness that I once felt.

I have to take care of myself every day because I was also diagnosed with Carcinoid Syndrome, which is a life-threatening illness related to my NETs diagnosis. Because of this, things such as excessive walking or eating the wrong foods can make my condition worse, and I also have to watch my stress levels as that really affects me.

I have to take a lot of practical steps that others may not have to worry about in their daily lives — for example, the heat this summer was particularly tough for me, so I have to be very careful and stick to my routine.

I had my second major lung surgery earlier this year, there were complications with fluid in my lungs and to be honest, I am still recovering from that. I am feeling a lot better every day, and for me it is the Carcinoid Syndrome that causes me more issues than the NETs. Everyone’s journey is different.

I know it sounds like a lot for one person to go through, but I am very happy to be here and I fight for every day.

My first grandchild was born recently to my son Jason, and she is such a blessing. I want to be as healthy as I can for her, for my family, and for myself.

NET Patient Network and Novartis this week announced the launch of the ‘Expand Your NETwork’ campaign, which aims to raise awareness of NETs, and the impact they can have on a person’s quality of life. The campaign will focus on real stories, told by people like me living with NETs, and has been launched this week in advance of the global NET Cancer Day, celebrated annually on November 10.

I would encourage anyone living with NETs to seek out the advice of a NET 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. And speak to others with the condition, that support can make all the difference.

For more information about the ‘Expand Your NETwork’ campaign, please visit:

http://netpatientnetwork.ie/

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