When Elaine Kelly was diagnosed with breast cancer in April 2011 she turned down the offer to go on a clinical trial. She underwent chemotherapy, radiotherapy, had a mastectomy, and believed she was going to recover. Exactly one year after her initial diagnosis she was told she had secondary breast cancer which had spread to her bones and lymph nodes.
“I was on all different types of regimes and chemotherapy but the progressions just continued, very slowly but steadily continued. I was getting my scans done after three months but there was always a small growth.”
The 39-year-old heard about a new drug available through clinical trials and despite her initial reservations, accepted a place on a study at St Vincent’s hospital in Dublin where she began taking T-DM1 in March 2014.
“I had all the worries and concerns that any particular patient would have in terms of how am I going to be minded, what’s the side effects going to be.” Nearly 18 months on, Ms Kelly knows she made the right decision.
“It suited me so well that I’m standing here today to tell you about it. The drug not only shrunk the tumours, the tumours pretty much disappeared in my body.”
The clinical psychologist, who recently ran her first triathlon, says taking part in the clinical trial gave her a sense of hope, “a sense of the possibility that your life could be extended for another two years, another five years”.
“And I don’t see those figures in my head at all, I see 20 years, 40 years, I see a long term future for myself.”
“I love the ability to go out and live my life and not to allow cancer to be the dominant part of my life, just to allow it to be a very small part of my life.”
“I wouldn’t have left the house before. You just don’t want to leave because you have to try and put a face on, put your wig on, feel the perspiration running down your neck and put your make-up on.
“For me you can’t put a price on that quality of life that I have now.”
Ms Kelly was speaking at the launch of Cancer Week Ireland 2015 which this year is highlighting how clinical trials can make a real difference to people's lives.
Only 10 per cent of Irish patients diagnosed with cancer are enrolled for studies with the Irish Clinical Oncology Research Group (ICORG), of which only 3 per cent are involved with drug trials where they receive new drugs.
“Participating in clinical trials is not something to fear and there are a number of benefits such as being able to access the latest treatments,” said ICORG chief executive Eibhlín Mulroe, adding that she would encourage anyone who is newly diagnosed or receiving treatment for cancer to ask their consultant oncologist about clinical trials.
Professor of surgery at Trinity College Dublin’s School of Medicine John Reynolds says cancer trials are key to establishing new methods to “prevent, detect and treat cancer”.
He says Ireland should aspire to building a culture of clinical trials among both the public and professionals to deliver the best possible care.
“In Cambridge 50 per cent of patients are on clinical trials,” he said. “It’s well less than 10 per cent in this country. The task is achievable but we need a collective effort and spirit.”
Cancer Week Ireland runs from September 14th - 20th with talks and events in Dublin.