Aoife McGuire said she “felt like our whole world had come crashing down”.
A Northern Ireland mum has said being diagnosed with an incurable cancer just days after her daughter’s first birthday “felt like our whole world had come crashing down”.
Aoife McGuire, 31 and from Newry, had found a lump in her right breast at the beginning of August, and unfortunately tests revealed that the cancer had spread to her lymph nodes, as well as a small lesion in her liver.
Aoife, who works as a financial consultant, was diagnosed with de novo metastatic breast cancer (meaning the cancer had already spread by the time of diagnosis) a month later just as she and her husband Ciaran had been marking the first birthday of their beautiful daughter Éala.
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Metastatic breast cancer, also known as secondary or stage 4 breast cancer, happens when breast cancer spreads to another part of the body. While it’s treatable, it can’t currently be cured.
Aoife told Belfast Live: “I came across someone locally on social media who had also been diagnosed with breast cancer in the previous years before me. She had shared her story as a kind of reminder on the first of the month to check your chest.
“I had been checking after having had my wee girl the previous August. It was in my mind because the midwives had said, remember to check yourself, otherwise I wouldn’t have been.
“I had no family history of cancer, and have no genetic mutations so I had no reason to be really worrying about it but for some reason it just kept playing in my mind to keep checking.
“I found a lump just as I started to do the examination, like almost straight away, and I just knew in my gut it just wasn’t right., as much as I didn’t want to believe it.
“I acted quite quickly. I found the lump on the night of August 1 before going to bed and the next morning I rang the GP. I think they knew from speaking to me that I was quite worried, so they had put me in for an appointment that afternoon.
“I was really lucky in that sense that I wasn’t fobbed off or had to wait any extended time worrying. I went to the GP the next day, and, obviously they said it’s most likely a cyst or something funny going on just because of hormones. Due to my menstrual cycle, she just said to give it another two weeks and see if anything changed with it and she’d examine me again.
“But after the two weeks had passed, nothing had changed at all, and I knew before I went to the appointment that I just wanted to be referred. I think that the doctor was still concerned because it was quite large.”
Aoife was able to be referred privately to the Ulster Independent Clinic as she had health insurance through her job and got an appointment within two weeks.
After tests, she received a secondary diagnosis on September 2, which while looking after a small child was a huge shock for Aoife and her family.
“That was extremely difficult as our daughter had just turned one on August 30 so whilst we were trying to celebrate her birthday, I knew that this was all looming,” she added.
Aoife started chemotherapy, targeted therapy and endocrine therapy, and a year on her most recent scan has shown no evidence of active disease, meaning that while the cancer is still present it is responding to treatment and cancer cells are either dormant or undetectable on scans.
She has been keeping active, spending time with family, and recently raised an amazing £18,900 through a coffee morning for Breast Cancer Now.
Aoife said: “Some days, or weeks are extremely tough when trying to navigate all of the emotions behind a secondary diagnosis, but I also have never been more grateful for the life I have and having time with my loved ones.
“I had good access to financial support that helped me get through the winter and Christmas following my diagnosis, but I know that not everyone will get the support they need and deserve.
“I wouldn’t be here today, or feeling so healthy if it wasn’t for the amazing research that has been done. The treatments available for the type that I have, HER2-positive, have come a really long way. I am so passionate about supporting research because it’s what gives me hope, and hope is what drives me every single day.”
Aoife bravely shared her story as a new study is setting out to understand and address health inequalities and better support people with incurable metastatic breast cancer in Northern Ireland.
Breast Cancer Now has awarded £383,600 to researchers at Queen’s University Belfast (QUB) to deepen the understanding of inequalities people living with the incurable disease in Northern Ireland experience at different stages – from diagnosis through to treatment, care, and accessing support services.
The researchers will use data from the Northern Ireland Cancer Registry and interview people about their experiences and needs. Thanks to earlier ground-breaking research, we know that approximately 1,000 people are living with the disease in Northern Ireland.
Northern Ireland was amongst one of the first countries in the world to produce estimated counts of all metastatic breast cancer patients, as cancer registries don’t routinely record these data.
The team at QUB will use this unique dataset to look at how factors like education, income, disabilities and mental health impact the diagnosis, treatment and care of people with metastatic breast cancer.
Then, working together with people living with the disease, their caregivers, healthcare professionals and patient advocacy groups, the team plan to develop a resource to address unmet needs and lessen the impact of health inequalities.
While this project is focused on data and people’s experiences in Northern Ireland, the charity Breast Cancer Now hopes that learnings from the research can be applied to improve and tailor support for people living with metastatic breast cancer across the UK.
The charity has been campaigning for better care and support for everyone living with metastatic breast cancer, as well as improvements to how data is collected, to ensure everyone can access services and support that best meet their needs.
Dr Simon Vincent, chief scientific officer at Breast Cancer Now, said: “We still need to answer many crucial research questions about metastatic breast cancer, and we’ve made it a top priority to build our understanding of the disease and make sure everyone affected by it receives the best care and support.
“This vital research will help to paint a picture of people’s experiences and needs in Northern Ireland, and explore how we can remove barriers to good quality care. We hope that what we learn from this project can be applied in other parts of the UK too, making a real difference for even more people living with metastatic breast cancer.”
Breast Cancer Now is the research and support charity here for anyone affected by breast cancer.
Call their free, confidential helpline on 0808 800 6000 to speak to their expert nurses, or find out more and donate at breastcancernow.org.
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