In February 2023, 35-year-old Noel was busy building his life – raising his son, planning a wedding, and working toward his goals – when a persistent cough led to a shocking diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results: a rare type of cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs called Thymic Carcinomacancer arising from tissues that line organs.
“Hearing ‘you have cancer’ was gut-wrenching,” Noel recalls.
“My future shattered in seconds.”
Within a week, he underwent urgent surgerytreatment involving removal of cancerous tissue and/or tumours and a margin of healthy tissue around it to reduce recurrence, followed by chemotherapya cancer treatment that uses drugs to kill or slow the growth of cancer cells, while minimising damage to healthy cells and immunotherapya treatment that uses a person's immune system to fight cancer. With 12 rounds costing around $60,000 – and not covered by the Government’s Pharmaceutical Benefits Scheme – Noel turned to fundraising for support and reluctantly accessing his wife’s
superannuation.
“It’s hard to believe this treatment isn’t covered for rare cancers. I had no idea of the challenges that rare cancer patients had to face,” he says.
“I wish I was more aware of rare and had not ignored that cough for so long.”
Thursday 26 June is Rare Cancers Awareness Day. You can show your support for people affected by rare, less common and complex cancers by downloading an Aware of Rare Info Kit or taking our online pledge for rare.