The frequently misdiagnosed Neuroendocrine Tumours (NET), is a term for a group of relatively uncommon cancers, often called the ‘quiet cancers’.
This cancer is slow-growing and symptoms can take time to develop so are often incorrectly attributed to more common problems such as irritable bowel syndrome, Crohn’s disease, peptic ulcer disease, or gastritis.
A support group, the Patient Network, is the brainchild of RTÉ’s Northern editor, Tommie Gorman, and he has played a leading role in pushing for a centre of excellence to be set up in Ireland.
Mr Gorman has battled this form of cancer for more than 20 years.
He was diagnosed in the early 90s when there was very little knowledge or expertise on the disease here.
The centre of excellence has now been set up at St Vincent’s Hospital, Dublin.
A study by the National Cancer Research Institute found there are 860 Irish NET sufferers. Internationally, five in every 100,000 people are diagnosed with this disease.
There were 1,927 people diagnosed here over a 16-year period from 1994 to 2010, representing an annual average of 113 new cases.
Survival rates are higher in women than in men.
The announcement of the national NET centre of excellence means that more resources and funding will be available and this is expected to lead to improved services and better access to treatments nationwide.
Dermot O’Toole, the national lead on NETs, said: “St Vincent’s is the national referral centre so to have this facility based there made sense, with satellite centres in Cork and Galway.
“By patients seeing the appropriate oncologists they become more educated about this type of cancer. A small proportion of this cancer type are passed on in the family.”
Similar numbers of men and women were diagnosed during the period in question, although cancers in the small intestine and thyroid were more frequent in men, and cancers of the skin and appendix were found to be more common in women.
The National Cancer Control Programme has now said that it is working towards setting up a National Centre of Excellence for NET sufferers based in St Vincent’s University Hospital, working with the Mercy University Hospital and Galway University Hospital.
Currently, a large number of Irish people travel to Uppsala in Sweden for treatments to fight this form of cancer.
Mr Gorman pioneered the use of the EU’s directive of giving equal access to treatments for all citizens. He has been followed by many Irish patients, and has received life-saving treatments in Uppsala with the full support of the HSE and its Treatment Abroad scheme.
Prof O’Toole added: “This type of cancer is rare and so there is little publicity about it. Per head of population the incidences here are the same as in the US. It is hoped that with time the centre will become larger.”
Prof O’Toole explained that funding has come from the National Cancer Control Programme, the hospital, and fundraising.