Leanne’s story: Diagnosed with a rare head and neck cancer
3 min read 11 August 2025
In 2022, Leanne was diagnosed with biphasic synovial sarcoma, a rare head and neck cancer. Her journey began in late 2021, when an especially difficult tooth extraction left her with swelling in her neck. It was around this time that she noticed a very small lump in her neck – however, she didn’t think much of it at the time.
Leanne then kept getting colds and viruses, blaming these on swollen glands. However, when the lump continued growing, she decided to see her GP.
“There was a voice in my head telling me to go to the doctor, and someone I knew had just passed away from breast cancer… I thought I’d get it checked out just to be safe.”
Initial tests didn’t give Leanne any reason to believe she had cancer. However, her clinic eventually contacted her to tell her she had abnormal cells. After being referred to hospital, she found out that she had malignant cancer cells.
Leanne vividly remembers sitting in the car, calling her husband with her results in hand. From here on, everything was a whirlwind.
Like many people diagnosed with head and neck cancer, she was first told she had a carcinoma. But after undergoing a tonsillectomy that left her sick for a week and a neck dissection, her diagnosis changed from a carcinoma to a sarcoma – a rare and complex type of cancer that is often hard to treat. On top of this, she learned that the sarcoma had been incompletely removed from her neck.
“Being re-diagnosed with sarcoma was a shock, like being told that I had cancer again.”
It was then that Leanne started treatment at Peter Mac, receiving six rounds of chemotherapy alongside six and a half weeks of radiation therapy. Leanne describes having her mask fitted for radiation as “the most confronting day” of her experience.
Despite this, Leanne “cannot fault” her experience with Peter Mac.
“I received tremendous care from everyone I encountered. I loved the outdoor spaces and the wellbeing centre was a really good place to have.”
Like many people with cancer, Leanne endured some unwelcome side effects. Losing her sense of taste was one of the toughest, especially around Christmas time when she couldn’t enjoy food with her family. Hair loss was another difficult side effect. For Leanne, the loss of her eyebrows and eyelashes was worse than losing the hair on her head as this was much harder to hide. To take care of herself, she often walked down the beach and reflects on how important these walks were throughout her treatment and recovery.
This is why support for cancer research is so important. Donations to Peter Mac help accelerate the discovery of kinder, gentler treatments for all cancers.
An added challenge for Leanne was how rare her cancer was. Having a “one in a million cancer”, she struggled to find any information about it.
“I would see things for ovarian cancer, for breast cancer, for prostate cancer, and I would think ‘Where’s mine? Where’s my research fundraising?’”
Leanne finished treatment in March 2023. She quit working a couple of months after returning, noting that “life’s too short”. Importantly, she got to attend her daughter’s wedding – a meaningful occasion, as she’d worried that she might not see her daughter get married. Reflecting on her life following her journey, Leanne notes the fear of her cancer returning she often feels.
''The fear of cancer returning is something I am trying to learn to live with and this is such a huge part of a cancer survivor's life, that I completely underestimated the impact of."
Our dedicated researchers are determined to discover cures for all cancers so that no one has to live with the fear that their cancer will return.
Now almost two years post-treatment, Leanne keeps busy with her gardening, her grandchildren, Pilates, beach walks, and the small business she runs with her husband. Inspired by having an uncommon cancer, Leanne has been involved in head and neck cancer advocacy and spoke at the Australia and New Zealand Head and Neck Cancer Society conference in 2024. She continues to be involved with Peter Mac through the Consumer Register supporting projects, giving presentations and volunteering to mentor others with cancer.
Stories like Leanne’s highlight the importance of raising funds to support research into all cancers, including rare cancers. discovering gentler treatments Thank you for your generous support.