Dear Breast Cancer Researchers of Ireland,
My name is Ciara Devine and I volunteer as a breast cancer patient advocate with Europa Donna Ireland – The Irish Breast Cancer Campaign.
Four years ago, I developed early stage breast cancer at the age of 36. My daughter was two years old at the time. To say that my diagnosis was a shock is somewhat of an understatement: I liken it to a scene from an action movie, where a car is driving along a quiet street, the lights are green, and suddenly a huge juggernaut smashes into the side of the car and pushes it off the road.
Yet here I am. And I am here today not because of a positive attitude or an amount of prayer (though my parents tried that too) but as the result of hard work.
That hard work took shape in unrelenting family and community support, and in grit that I never knew I had as I dragged myself through treatment and recovery. That hard work took shape in a dedicated and expert multi-disciplinary team working in a specialist breast unit under a national cancer strategy. That hard work also took shape in decades of painstaking, high-quality research. We all worked together to get me to this point and I will always be grateful. I know how lucky I am.
Research has made a concrete difference to my life: I had breast-conserving surgery instead of a mastectomy, thanks to randomised trials that showed that lumpectomy plus radiation is at least as good as mastectomy, with less burden to the woman. I had a sentinel-node biopsy, drastically reducing my risk of developing lymphoedema. The radiotherapy treatment I received minimised toxicity and long-term side effects to healthy tissues and organs. I had a genomic test to help me to make an informed decision about whether or not to have chemotherapy. (It was still a difficult decision as I fell into that unhelpfully large grey area of medium risk. I had the chemotherapy.) My hormonal therapy was extended from five years to ten following data from several large-scale international trials.
Of course, things have moved on even since 2013. Survival rates and quality of life for cancer patients are improving as medicine takes leaps forward, but medicine cannot do that without research.
But, research is expensive and time-consuming. To have the most benefit, to get the most value for money, your research must strive to be relevant and impactful.
So how will you know if you are asking the right research questions? You must ask patients. We will tell you what matters because we are the frontline.
Not only are we patients, we are people with wide-ranging skills and expertise. We are journalists, lawyers, carers, teachers, artists and some of us are scientists and doctors too. We have a lot to bring to the table and can also help to communicate complex ideas to different audiences. It is amazing what one can learn about molecular biology and signaling pathways with a laptop and plenty of motivation.
Patient and public involvement in research is evolving and many patients fully support this changing paradigm. For instance, the public outreach initiatives at UCD cancer research institutes, from open labs to the ‘Patient Voice in Cancer Research’ scoping exercises, have been instrumental in opening conversations between individual patients and patient groups and researchers. Increasingly, Europa Donna Ireland collaborates on research proposals with Irish researchers, ensuring the relevance of proposed research to patients. We are experiencing a tangible willingness from your research community to share and engage with patients and we welcome that.
We would also like to point out that we patients – the diverse bunch that we are – can be your best advocates. We can call for more funding for research. We can rally support for prioritising research on the national political agenda. Sometimes we just need to be asked. Sometimes we need to make ourselves heard.
It is a strange feeling to know that if I had been born a few generations earlier, then I probably wouldn’t have survived breast cancer – this far. I believe that research and its careful application saved my life and I want the work to continue, to save the lives of others, to reduce the burden of breast cancer and its treatment on women and on their families and on society.
Lastly, I would also like to say that research makes a difference to my life in another way, a less concrete but equally important way: it gives me hope. To know that excellent, focused research is happening in this country, to think that even I might be able to contribute to the success of this work, even to imagine that my daughter might grow up without fear of breast cancer – this gives me enormous hope.
For this, thank you.
Volunteer Patient Advocate
Europa Donna Ireland – The Irish Breast Cancer Campaign
Adapted from a talk delivered to BREAST-PREDICT Oversight Committee Review Meeting on 19 October 2017 at UCD Conway Institute, Dublin.