Live Life to the Fullest, Act with Purpose

In early 2020 Sam had just finished his Finance degree and started full-time work as a Personal Banker. At 22, life felt like it was just beginning. 

“I was ready to make the most out of the corporate world,” he says. “And pretty convinced I'd be a boxing or MMA world champ one day too.”

Throughout 2020, Sam noticed subtle, unusual sensations in his body, particularly in his lungs. They weren't severe, just “a bit odd.” Then in December, he found a small lump in his neck. Encouraged by his mum to get it checked out, he visited the doctor and was told it was most likely a viral infection. 

However, in January 2021, he started experiencing strong and persistent shoulder pain on the same side as the lump. 

By February, Sam started experiencing chest pain. His doctors ordered tests, including a chest X-ray. “The radiologist sat me down and told me they'd found some anomalies and needed to take an urgent CT scan.”

The same day he received a call from his doctor with urgent instructions, go home, pack an overnight bag and head to the nearest hospital. On the way, Sam went through the report his doctor had emailed him, his fears began to set in as he read the words “widespread disease” and "aggressive metastatic neoplasm.”

A moment that Sam recalls from that day was the nurse who helped him check in, “She quietly read the report with a serious look on her face, then stopped and sat with me, gently grabbed my hand, looked me in the eyes and simply said - it’s going to be ok Sam. That little moment meant a lot and really helped calm me down.” 

The next few days in hospital were a whirlwind. Sam was eventually discharged, followed by six weeks of uncertainty while doctors worked to confirm a diagnosis. He underwent a couple biopsies but his case didn’t fit typical patterns. His samples were even urgently flown over to a specialist in Boston, USA, for further analysis. 

During this time, his symptoms worsened. “I remember playing soccer and being really out of breath, then when I got home I started to cough up blood into the bathroom sink which really scared me.”

Sam was referred to the specialist sarcoma center at Peter Mac. As his condition deteriorated, treatment needed to begin urgently. He was told the cancer was late stage, often considered incurable, but not always terminal. Further testing confirmed Sam had a very rare and aggressive sarcoma called Desmoplastic Small Round Cell Tumour (DSRCT). 

Sam’s treatment journey has been intense over the past five years. Shortly after his 24th birthday in May 2021, he began six cycles of chemotherapy and immunotherapy over 18 weeks. He hoped to return to normal life after, however the cancer progressed. 

“Around five weeks after finishing I began to experience pretty severe pains over my body,” following scans revealed suspicious bone lesion activity and a different, more intensive chemotherapy regimen followed, lasting close to another year. 

“Cycle by cycle we marked it off and with a lot of luck and a bit of hard work things began to turn around.”

Over time the treatment began to work. By the end of 20 rounds of chemotherapy, his scans had improved enough for surgery, something that Sam once felt was out of reach. In September 2022, Sam underwent an upper right lung lobectomy. After recovering, he had around eight months of treatment and was able to enroll in a clinical trial for an experimental CAR-T cell therapy. 

Later the same year, Sam started experiencing migraines and an MRI revealed a large brain metastasis. 

“This was a shock for everyone. My trial enrollment was postponed whilst I was referred for urgent radiotherapy and brain surgery.” After surgery, Sam experienced a few complications but was able to go home a few days later, just in time to see the New Years Eve fireworks welcoming in 2024. 

Following further treatment, Sam was able to rejoin the CAR-T trial. While the process was demanding, it showed promising results and kept the disease under control for some time. When the trial eventually stopped working, he switched to an experimental targeted chemotherapy to manage the cancer in his lungs. This lasted for around 9-10 months before he began another treatment in December 2025, which he is still on today while continuing to explore further options.

One of the hardest moments of Sam’s journey was hearing that the cancer had spread to his brain. “I felt like the walls were closing in and it was a really difficult time to navigate through. I remember feeling so totally vulnerable and powerless, at times it felt insurmountable, but tried to look at it practically and just do my best to take the challenge as it comes” 

Today, Sam remains deeply involved in his treatment and the broader sarcoma community. “I’ve found it really empowering to stay involved,” he says. “I find the science and biology fascinating, so for the past few years I’ve been working on researching and mapping out all the most promising directions to try to get involved in the science space.” Sam has also begun building connections in the rare cancer space by attending an ANZSA scientific conference where he met scientists who dedicate their time to finding new treatments. 

As a sarcoma spokesperson, Sam hopes people understand the reality faced by many young patients. “Many other young people that come through the Peter Mac AYA service are not so lucky with their treatments, through no fault of their own. Some of their stories fill me with a deep passion to live life to the fullest, act with purpose, and quite frankly enrage me when thinking about how unfair it is.”

Simultaneously he feels, “proud and passionate that we as a wealthy country choose to support young people doing it tough, not through a detailed cost-benefit analysis but because it’s the right thing to do.”