Desiree’s Story
In December 2009 I was diagnosed with Adenoid Cystic Carcinoma shortly after turning 38. I was a single mum to three wonderful children, and my youngest was only eight years old.
Since being diagnosed more than sixteen years ago, I have undergone 75 separate operations and procedures. These have included the removal of my palate, upper jaw, sinus, adenoids, nerves and lymph nodes. In 2022, surgeons were forced to remove the remainder of my upper jaw and palate due to the ongoing effects of treatment.
In addition to these surgeries, I have undergone more than 70 sessions of radiation therapy and hyperbaric treatment. Together, these treatments have meant that I have spent a significant part of the last sixteen years in doctors’ surgeries, treatment rooms and hospitals. Yet my surgeries are still not over.
During my first group of surgeries, my medical team did a remarkable job rebuilding my palate using skin, muscle and tissue from my left arm and right hip, along with an artery taken from my left arm to supply blood to my reconstructed palate.
The financial cost, even with private health and income protection insurance, has had a significant impact on my family. Over the course of my journey, I have incurred more than $130,000 in out-of-pocket medical expenses, and further reconstructive surgery still lies ahead.
During my journey, the loneliness of having a rare cancer has had a profound personal impact. It’s not just the medical professionals constantly saying, “I’ve never heard of your cancer.” It’s also not having people around you who truly understand what you’re experiencing.
Being diagnosed with a rare incurable cancer that allows you to live for many years, while continually battling the consequences of treatment, is something that most people struggle to comprehend. The reality is that while you may survive, the journey never truly ends.
More than sixteen years after my diagnosis, many people still view cancer through the lens of what they know about more common cancers. They expect that after treatment you recover, move on and return to normal life. How do you explain a daily struggle that has continued for more than a decade and a half? How do family and friends understand when even many doctors have never encountered your cancer before?
The creation of Without A Ribbon came about because of this experience. As Founder of the charity, I made a commitment that no one diagnosed with a rare cancer should have to face their journey alone. Through the support, understanding and connection that Without A Ribbon provides, we are ensuring that others can find the peer support that I wished had been available when I was first diagnosed.
Today, Without A Ribbon supports Australians diagnosed with extremely rare cancers, helping them find connection, understanding and hope at a time when they often feel isolated and alone. What began as my personal experience has grown into a community that ensures others do not have to walk this path by themselves.
My journey continues, but so does my determination to ensure that no one facing a rare cancer diagnosis feels alone. I plan to be here for a long time to come and, with your support, continue building a legacy that helps Australians diagnosed with rare cancers for decades to come.
Desiree Fraser (Desy)
President & Founder
Without A Ribbon
