Tom O’Donoghue is a leading member of a new patients organisation, campaigning to improve how Ireland’s health services deal with a rare form of cancer.
Tipperary born Tom was first diagnosed with the illness in 2007 and is managing to cope with the condition in the six years since then.
He says - “The condition I have is called carcinoid cancer. It involves tumours in the Neuroendocrine or hormone-producing system. It is a difficult disease to diagnose: between two thousand and three thousand Irish people have it and people like me make up between 2 and 3 per cent of Ireland’s cancer population.”
Last year Tom and fellow carcinoid patients in Ireland set up their own patients advocacy group, (NET Patient Network), to provide better support for those affected by the disease and to campaign for better treatment paths in Ireland.
Says Tom: - “We had a great event a year ago in Dublin during which patients and their families and friends got to meet and interact with the Irish doctors who are working to combat the disease. We have arranged to have our second annual meeting at the Springhill Hotel in Kilkenny, starting at 9.30am on Saturday, November 9 and all are welcome to attend what is a free of charge event.”
Tom describes carcinoid cancer as a chronic disease. “You rarely get the all clear from this condition but if you are lucky, through surgery, drugs treatment and other procedures, it is possible to keep the disease and its symptoms under control and to lead an almost-normal life.” he says. In some situations, carcinoid cancer patients receive sanction from the HSE to travel abroad, to international centres of excellence in places like Sweden for procedures, currently not available in Ireland. But services in the country have improved significantly in recent years. In June 2013, gastroenterologist Professor Dermot O’Toole was appointed National Lead, fronting the efforts to develop structures to conteract the illness. He now runs a weekly clinic at St Vincent’s Hospital, Dublin for carcinoid patients.