Play Emily is just 32 years old and is running out of time
Emily was a young, fit and energetic 27-year-old when suddenly, her life took a devastating turn. What began as headaches and sinus issues quickly escalated into something far more alarming — a sudden loss of vision in her left eye. Doctors discovered a tumour the size of a cricket ball in her sinus and skull bone.
The diagnosis, a rare and aggressive form of cancer known as NUT carcinoma. Only months earlier Emily had been running every day, thriving in her career, and had just met her partner, Jason. Her diagnosis came with the prognosis: just six to nine months to live. Time, once abundant, now felt fleeting and precious.
"Four and a half years ago, out of nowhere, I was diagnosed with a rare terminal cancer.”
Emily is one of about 100 known people diagnosed with NUT carcinoma each year, and to her knowledge – she is the longest known survivor. Though her cancer has stabilised, Emily knows her time is limited - her treatment could stop working at any time.
Despite meeting only weeks before her diagnosis, her partner Jason never left her side, and they married last year in Tasmania. Together, they continue to tick off her “living list”, including adventures like trekking Tasmania’s Capes Track. “We make the most of every day, and I’m grateful for the opportunities we’ve been given thanks to medical research advances.”
“We make the most of every day."
Emily’s dreams of a family and career were taken over by doctors’ appointments, scans and treatment. She has given everything for more time, facing more than anyone should, enduring rounds of chemotherapy, radiotherapy and immunotherapy. But these
treatments did not control her cancer and the clock kept ticking.
Then, hope emerged off the back of genomic profiling. She was matched with an experimental targeted treatment called BET inhibitors. This treatment stabilised her tumour, giving her four and a half more years of life, and counting. Research has given her more time but she lives life knowing the clock could start counting down again.
“Without research, I wouldn’t be here.” - Emily
For 40 years Australian Cancer Research Foundation (ACRF) has been backing cutting-edge research, leading to new discoveries that help people like Emily. Only the projects that our Medical Research Advisory Committee identifies as having the greatest potential for scientific discoveries and improved patient outcomes are granted funding. Research into the utilisation of genomics for cancer research has been supported by ACRF since 1985.
Genomics is leading the charge in the area of personalised medicine. By revealing information to doctors about their patients unique tumour make-up and mutation they can unlock the potential of different treatment paths.
For Emily, understanding her specific mutation meant she was able to be matched with a cutting-edge treatment not even available in Australia. This targeted drug called BET inhibitors has given Emily four and a half more years of life, and counting.
Targeted treatment through genomics
At the ACRF Centre for Advanced Cancer Genomics at Harry Perkins Institute of Medical Research in WA, researchers are using cutting-edge equipment funded by ACRF to analyse
thousands of cells from numerous tumours.
Gaining a deeper understanding of the genetic makeup of different cancer types and how they evolve paves the way for discoveries. Researchers can identify new drugs, predict how a patient may respond to treatment, and develop innovative therapies.
Accelerating genomics research with technology
The ACRF Victorian Centre for Functional Genomics at the Peter MacCallum Cancer Centre is a facility focused on uncovering what genes regulate cell shape and behaviour. By doing so, researchers are gaining a deeper understanding of what causes certain types of cancer to spread and develop resistance to treatment.
"With ACRF funding Australian researchers have been able to access cutting-edge equipment and technology, giving them the opportunity to discover novel factors in cancer development and new therapeutic targets," Dr Kaylene Simpson, Centre Manager, said.
Will you support the research that can give people like Emily more time?
Thanks to ACRF funding, researchers have access to world-class technology that allows them to analyse genes with exceptional precision.
It's this kind of cutting-edge research that has helped survival rates for cancer improve from 50% to 70% in the last 40 years. Until that is closer to 100%, we won't stop working hard to support big, bold ideas that save lives.
