Clinton, NSW

Holding Onto Time: Living with Medullary Thyroid Cancer in Australia   

At 42 years old, Clinton James is facing a diagnosis few people ever expect to encounter. After two and a half years of being misdiagnosed, Clinton finally received an accurate diagnosis of medullary thyroid cancer in 2016. An eight-centimetre tumour was growing back into his neck and had caused irreversible damage. Following a central and left neck dissection, his thyroid was completely removed, along with other tumours found around his neck.

Living in Australia with his wife and children, Clinton’s journey reflects both the challenges of rare cancers and the profound impact of access to life-saving treatment.

Unlike more common cancers, medullary thyroid cancer does not typically respond well to conventional treatments such as chemotherapy or radiation. For Clinton, this has meant undergoing multiple surgeries in 2016, 2018, and 2019 in an effort to control the disease. While these interventions initially provided some relief, the cancer has continued to progress throughout his body.

Since June 2024, however, Clinton has been receiving a targeted therapy that has dramatically altered the course of his illness. The medication has halted tumour progression, with no new tumours detected on recent scans. Even more significantly, it has improved his quality of life beyond what his medical team had anticipated.

“This treatment is quite literally keeping me alive,” Clinton explains.

Despite its effectiveness, access to this medication presents a major challenge. Because medullary thyroid cancer is rare, the treatment is not currently subsidised under Australia’s Pharmaceutical Benefits Scheme (PBS). For a period of time, Clinton was able to receive the drug through a compassionate access program provided by the pharmaceutical company. Recently, however, that support was withdrawn.

The impact was immediate and devastating. “A heartbreaking phone call from my specialist informed us that the cost of staying alive would now fall on us,” he says.

The medication is offered on a sliding scale, which is frustrating, as some patients can access it for anywhere between approximately $6,000 to $16,000 per month, an amount far beyond what Clinton, his family, and many others can sustain. Despite continuing to work as much as his health allows, and managing the side effects of treatment, the financial burden is overwhelming.

Yet the stakes could not be higher. Without continued access to this therapy, Clinton’s prognosis becomes significantly more serious. With it, he has something invaluable: time. Time with his family. Time for the treatment to keep working. Time to continue fighting.

Clinton’s story highlights a broader issue faced by many Australians living with less common cancers, the gap between medical innovation and equitable access. While targeted therapies are transforming outcomes, they often remain financially out of reach for patients when not publicly funded.

Asking for help has not come easily. “I’ve always believed in standing on my own feet,” Clinton says. “But this is bigger than pride, this is about survival.”

Through the support of others via GoFundMe, Clinton hopes to continue accessing the medication that is sustaining his life. Each contribution, whether financial or through raising awareness, represents more than assistance, it represents hope.

For Clinton, that hope means everything. It means more time as a husband, more time as a father, and more time to keep moving forward in the face of an uncertain future.

In March 2026, Clinton, his mother Debbie (a staunch advocate for change) and NeuroEndocrine Cancer Australia travelled to Canberra to make their voices heard by the people capable of improving access to life-saving medications for patients with rare cancers.

In a conversation with NECA, Clinton expressed his disappointment at not knowing about NeuroEndocrine Cancer Australia sooner. “Everyone needs to know about this organisation and the amazing people within who are trying to make a difference,” he said. He learned that NeuroEndocrine Cancer Australia does not receive the same level of funding as other organisations, making it difficult to generate awareness of how they can help those in need.

“It is my hope that, now seeing how impactful the support from NeuroEndocrine Cancer Australia is, more awareness and support will be generated. I will do my best to support them wherever and however I can,” Clinton said.