Alicia Lirola is one of Target Ovarian Cancer’s research advocates, ‘experts by experience’ working with our Scientific Advisory Board to guide which research projects we fund. Here she talks about her motivation to become a research advocate and how it’s changed her.
I was diagnosed with ovarian cancer at 46. It’s one of the rarer types – mucinous ovarian cancer. I’ve always been realistic about the prospect of cancer. It’s not difficult to imagine when we’re told that half of us will have it at some point, but I never thought it could be so soon.
In the months after my diagnosis I tried to be selective when browsing the internet, as I didn’t want to just believe anything. I selected articles from charities, universities, well-known hospitals or the NHS. Soon, I found myself reading scientific studies, looking up every other word on Wikipedia.
As I read more about ovarian cancer research, the interesting thing was to see how rapidly knowledge and treatment are improving. I learnt that there has been very little research about my type of cancer, which was disappointing but not unusual when it comes to rarer types of ovarian cancer. One of Target Ovarian Cancer’s projects is helping to tip the scales.
After finishing my treatment I discovered Target Ovarian Cancer. While I was browsing the website, I saw information about becoming a research advocate and it seemed like the right next step to take.
It’s so important for women who have had a diagnosis of ovarian cancer to be involved in research as patient advocates. We are the ones with the experience of healthcare systems, cancer drugs, and delays in diagnosis. We are the experts by experience who will be impacted by research, and as patients, we know some things that scientists don’t.
We can and should influence scientific work to ensure that it really does benefit us.
In the lab
I recently took part in the Independent Cancer Patients’ Voice (ICPV) course, “Science for patient advocates” at Bart’s Cancer Institute in order to gain some specialised knowledge.
It was a residential study week that made me feel like I was back at university. In the morning we attended seminars and in afternoon laboratory practical sessions. I learnt about epidemiology, cell communication, tissue collection, genetic mutation, oncogenes - the list goes on!
It felt really personal, as we learnt how things actually work in treatment, like how the toxic agent from chemotherapy works to destroy cancer cells.
We were taught by scientists who explained complex concepts with detail and passion. I got a real sense of the commitment the researchers give to their specific field of work, as well as the humility and respect they have.
For me, the highlight of the course was seeing research being done right there and then. It was hugely beneficial to hear from the scientists about their drive to give people with a cancer diagnosis a better quality of life through new treatments. I’d rather see cancer as a condition you can live with, given the right treatments like immunotherapy, which Target Ovarian Cancer are currently funding a project on.
The course really reminded me how important it is for people with direct experience to advocate, encourage and fund scientific research. It’s given me more confidence in my work as a research advocate, and I´m sure it will make me even better at understanding the finer details of the research applications I review with Target Ovarian Cancer – even though we have a board of scientists and clinicians alongside us.
I’m now even keener to help, not for myself, but for the women who will be diagnosed in the future. We must fund research in order to find less invasive, less aggressive treatments, more ways to improve people’s quality of life and ultimately, give women the best chances of survival.