'I found a massive lump and signed up for a cancer trial' - Irish mother-of-three
Far from being a last resort, clinical trials offer increased treatment options to cancer patients, and a new campaign is urging people to check with their doctors to see what's out there.
Emma Corcoran was in a changing-room trying on some clothes when she noticed something unusual about one of her breasts.
The mother-of-three had recently noticed that her bra had become tighter, but it was only on that day in June 2016, while trying on a top she was planning to buy, that she spotted the tangible change in her left breast:
"When I took off the top I was trying on, I noticed that my left breast had almost changed position," she recalls.
"It appeared to have dropped a little lower and the nipple was almost pointing down."
At the time, Emma put the odd change in her breast down to turning 40, but in hindsight, there were other clues - when a friend gave her a strong hug that left her chest aching for days afterwards. Then there was the fact that she had felt very tired in recent months. She blamed her busy lifestyle for the tiredness; she was working in administration at a school for deaf children, along with caring for her young children.
However, on July 8th came a warning that the Lusk, Co Dublin resident was unable to ignore or attribute to her age or lifestyle.
That night, when Emma was in bed she casually scratched her breast and found what felt like a "massive lump".
She saw her doctor, who referred her to the breast clinic where she was diagnosed quickly with stage two invasive ductal carcinoma (IDC) breast cancer.
Emma had a partial mastectomy in her left breast and underwent the removal of lymph nodes, which had also been affected. Then she began treatment - a mixture of chemotherapy and radiation.
Initially she didn't know anything about the possibility of cancer trials, which investigate new ways to prevent, detect and treat cancer. However, after reading an article about such trials in the Irish Independent Emma began to look into what trials were taking place in Ireland.
In all, about 100 cancer trials, seeking answers to cancer, are actively recruiting people living with cancer, and attending one of 16 hospitals around the country.
At any one time there are in the region of 6,000 people taking part in these cancer research projects.
More than 50pc of all clinical trials in Ireland are cancer trials. However, new research published last week shows that fewer than one in ten (9pc) patients living with cancer have asked about participating in a cancer trial.
The study also found that many patients consider cancer trials to be a 'last resort' treatment option, with 22pc of people surveyed believing that cancer trials were only used when standard treatments had not worked.
Yesterday was Clinical Trials Day 2018, a day that seeks to raise awareness about, and promote a better understanding of, the possibilities offered by clinical research trials. At the same time, Cancer Trials Ireland, a not-for-profit registered charity and the only organisation in Ireland focused solely on cancer research trials has just launched its 'Just Ask Your Doctor!' campaign which aims to encourage patients to talk to their doctors and support teams about participating in trials which could be of benefit to them.
Thanks to her own research, Emma found a suitable trial, the Pallas trial, for which she would be eligible. Pallas is aiming to see if a targeted medication can decrease the chances of breast cancer coming back. She was accepted onto the trial and began treatment in April 2017; the trial runs until July 2019.
Other than low energy levels, there have been no major side effects of the drugs which she now takes as a participant in the trial, reports Emma, now 42. She says she joined the trial partly to help others, and partly to help herself: "If just one person didn't have to go through what I went through, I'd be delighted," she says.
She points out that she mightn't have had the opportunity to avail of the treatment options that have helped her own recovery if other people had not trialled those drugs before her. She also wanted to give herself a better chance of preventing the cancer from coming back. She's glad she's taking part: "Life is back to normal, although it's a new normal. My perspective on things has changed and I don't sweat the small stuff anymore.
"Prior to my diagnosis I was always on the go, but now my priorities are the children and myself and making time for myself."
She has just started a new part-time job closer to home: "I look at it as having a condition I can live with and I park it there."
People who join a clinical trial generally experience better outcomes, observes oncologist and cancer researcher, Professor Brian Hennessy, clinical lead with Cancer Trials Ireland. Clinical trials give people early access to new treatments before they become widely available, he explains, pointing out that this is the way that new efficient drugs are discovered.
"The trials give people with cancer access to new efficient treatments years before they come on the market," he says, adding that people in a diverse age range can engage in cancer trials for a variety of cancers - from bowel bladder and kidney to lung and paediatric cancers.
Those opposed to the idea of participating in a trial, he reports, will often say they fear becoming a guinea pig: "I think that comes from a lack of information. It's a legitimate fear but when people get the information and understand what we do in clinical trials, I find they often go from a position of scepticism to one of hope, and are willing to participate."
He says the least someone will get in a clinical trial is the current standard of care.
"But what we are generally testing is a better standard of care, so some patients will get the standardised care while others will get the standard treatment plus the new treatment because we are trying to prove that patient outcomes are better with new treatments."
A significant benefit of clinical trials like these is economic. Professor Hennessy says treatment is generally provided free of charge during a trial so the state does not have to pay, while the process of running trials creates jobs, not just in Cancer Trials Ireland but in cancer trial units in hospitals around the country.
"Cancer trials also bring pharmaceutical jobs to Ireland because some of the trials are done in conjunction with the pharmaceutical industry," Professor Hennessy says.
What is the most important factor for people in deciding to take part in a trial? The research published last week showed that 82pc of patients were motivated by the hope of living longer and feeling better. However, 81pc participated in order to help advance research into the condition, and 76pc did so after getting a recommendation by their cancer doctor.
"A significant motivational factor for many people is not that they will get better treatment for themselves but that the research they are participating in will improve treatment for others people in future generations. It is hugely admirable that people think like that," says Professor Hennessy.
Health & Living