Twenty-five years after its founding, the Oesophageal Cancer Fund (OCF) is being credited with helping to transform the outlook for oesophageal cancer in Ireland from a disease once widely regarded as a death sentence by many to one where prevention, early diagnosis and survival are increasingly realistic goals.
Founded in 2001 by Noelle Ryan and a group of friends following the death of a childhood friend, Lucilla Hyland, from oesophageal cancer, OCF was established at a time when awareness of the disease was low, diagnoses were often made at an advanced stage and treatment options were limited and frequently palliative.
Today, Ireland is recognised internationally for excellence in the clinical management of oesophageal cancer, and in associated scientific research.
Survival rates have improved significantly over the past 25 years, with cure rates approximately doubled, driven by advances in multidisciplinary care, research and technology within a nationally regulated centralised programme.
Improved awareness has also contributed to more patients being diagnosed at an earlier stage, when outcomes are better.
New Amárach research* commissioned by OCF highlights why the charity’s work remains as relevant as ever.
While more than three quarters of adults experience heartburn and most feel confident treating it themselves, nearly 70% of those surveyed say they would not be confident recognising the early warning signs of oesophageal cancer.
Reflecting on this milestone, OCF founder Noelle Ryan said the progress achieved over the past 25 years has been extraordinary, but public awareness must continue to improve,
“When we started OCF, oesophageal cancer was rarely talked about and many people were diagnosed too late.
“There is far more hope today, but this research shows we still need to help people understand the symptoms and that difficulty swallowing food or persistent heartburn should be checked out by a GP.”
Professor John Reynolds, National Lead for Oesophageal Cancer and a Board Member of OCF, said: “The Oesophageal Cancer Fund has played a significant role in helping Ireland achieve survival rates comparable with the best international benchmarks, and in supporting patients in survivorship.
“From the very beginning, OCF focused on raising awareness of ‘red flag’ symptoms such as swallowing difficulties, while also supporting vital research and patient education.
“More recently, the emphasis has expanded to prevention and the importance of not ignoring severe or chronic reflux, which can be linked to Barrett’s oesophagus, the main risk factor for oesophageal cancer.”
OCF patron and professional golfer Padraig Harrington, echoed this sentiment saying, “My dad passed away from oesophageal cancer over 20 years ago.
He was very fit and strong, so it came as a huge shock. On average, people wait around three months before seeking medical advice, and that delay can make a real difference.
“If you’re experiencing symptoms like difficulty swallowing food, persistent heartburn or hiccups, I would urge you to get them checked.
“At the very least, it can give you peace of mind.
“The Oesophageal Cancer Fund does fantastic work in raising awareness, as knowing the symptoms and acting early really can save lives.”
Prevention has become a cornerstone of care, particularly through Ireland’s Barrett’s Oesophagus Registry and Biobank, funded by OCF and Research Ireland.
The registry now includes almost 10,000 patients, enabling clinicians to monitor progression, intervene early and, in many cases, prevent cancer from developing altogether.
To date, around 800 patients with pre-cancer or very early-stage cancer have been treated through this programme, with a 100% cure rate.
This result highlights how targeted investment in such research and development can have such a positive impact for patients.
Patient ambassador Gillian Schorman, a nurse who was diagnosed four years ago with oesophageal cancer, said her experience highlights just how far care has come.
“When I trained as a nurse over 40 years ago, oesophageal cancer was like a death sentence.
“Patients would fade away because they couldn’t eat and the surgical options and nutritional support were very limited back then.
“So, when I was diagnosed, I was terrified, but the care and support I received was so positive, with major advancements in the surgical and nutritional options available nowadays.
“I had real options, support and hope, and I’m proud to be part of the OCF community helping others navigate their diagnosis.”
Looking ahead, Carmel Doyle CEO of OCF, whose husband is a survivor of oesophageal cancer, says, “The next 25 years must focus on prevention, early diagnosis and education, particularly among men, who account for the majority of cases and are more likely to delay seeking medical help.
“That’s why we are calling for greater engagement with GPs and pharmacists, who are often the first point of contact for people repeatedly self-treating heartburn and acid reflux.
“We are also calling on more businesses, clubs and associations to get involved through their employee wellbeing and men’s health programmes, because increasing awareness about this cancer will save lives.”
February is oesophageal awareness month. To continue raising awareness of oesophageal cancer and its symptoms, OCF’s flagship fundraising and awareness campaign, the 25th Lollipop Day, will take place on 27th and 28th February, with communities, schools and businesses across Ireland raising money to support vital research, patient support and education.