Cancer Trials Ireland, the national organisation dedicated to advancing cancer clinical trials, has announced details of a new research survey of women with breast cancer whose cancer has spread, also known as secondary or metastatic breast cancer. The survey – Ireland’s first-ever patient-led research to undergo rigorous ethics and scientific approval – is being spearheaded by Siobhan Gaynor, a former research scientist who has also been diagnosed with secondary breast cancer.
The survey will investigate patients’ experiences of their cancer journey – from discussions with medical teams to accessing information sources, from sexuality and fertility issues to financial stresses, from mental health impacts to conversations with family and children, from participating in exercise programmes to engaging with palliative care. Among a wide range of questions, respondents will also be asked how they felt their diagnosis was delivered, and how and when life expectancy should be discussed, if appropriate. The survey is aiming to recruit up to 300 patients who have been diagnosed with stage IV secondary breast cancer and is now available online at www.cancertrials.ie.
Making Life Easier
Siobhan Gaynor, a member of Cancer Trials Ireland Patient Consultants’ Committee, was first diagnosed with breast cancer in May 2019. In October 2020, Siobhan was diagnosed with secondary breast cancer and is now receiving a targeted oral chemotherapy and hormone therapy. Having worked for over 30 years in developing medicines and undertaking clinical trials, and now as co-chief investigator for this study, Siobhan is determined to make life better for others:
“Once I finished active treatment for my initial diagnosis of primary breast cancer, I was more than happy to move on with a renewed sense of how precious life is. Receiving the news of secondary breast cancer, and knowing that it is currently incurable, was a completely different animal to deal with. It left me reeling. Suddenly having to confront my own mortality, I felt traumatised, afraid and lost.
“For me, coping with my secondary diagnosis, there were clear gaps in areas such as access to information and emotional support. I wondered ‘do I tell my family?’, ‘how long will I live for?’, ‘how much will it cost me?’. I had lots of questions but few answers. Yet, I was struck by the fact that there was very little by way of scientific research into these most difficult and upsetting aspects of my care. Talking to other patients, I learned that this was very much their experience too and so the need for this study began to formulate in my mind.
“Diseases happen to people and patients are the ultimate experts in their own bodies. Answering ‘the why’ of health research, it is vital that we capture and learn from these real-life experiences. With my science background, I wanted the survey to be on a solid scientific footing and evidence-based with which to drive change in cancer care, to develop new health and psychosocial services and resources, and to make life that little bit better for those who may follow in our footsteps.”
Led by Patients
For the other co-chief investigator on the study, Prof. Seamus O’Reilly, Consultant Oncologist and Vice Clinical Lead, Cancer Trials Ireland, this research has the potential to influence not only breast cancer care, but how other advanced cancers are cared for as well:
“This is the first time in Ireland that a piece of research has been developed by patients for patients with the same rigorous approach as a clinical trial. We believe that this will assist us in our mission to improve cancer care for all patients. While most secondary breast cancers are currently incurable, thanks to treatment advances, women are living longer. However, we also need a very clear focus on quality-of-life aspects, such as emotional well-being and symptom control.
“While secondary breast cancer has the highest prevalence of all stage IV cancers, we anticipate that the outcomes of this work will also inform other patient-led research for stage IV cancers such as prostate, colorectal, and lung.”
The development of the survey has been overseen by a steering committee with experts in psycho-oncology, palliative care, social care, radiation and medical oncology, and, of course, patients. Over 30 patients with secondary breast cancer were also involved in developing the survey, which has undergone a rigorous scientific and ethics review process by the Royal College of Surgeons in Ireland.
For more information on the work of Cancer Trials Ireland, visit www.cancertrials.ie
