The Gold Coast mechanic was in his late twenties, working full-time and enjoying an active lifestyle with his partner, Lucy, when persistent swelling in his right thigh caught their attention.
"Lucy noticed it first," Cain recalls. "It wasn't going away, so I went to the GP."
What followed was a whirlwind of scans and uncertainty. After an ultrasound and MRI, Cain woke one morning with significant pain in his right leg and presented to hospital.
"I hadn't received my scan results at that point," he says. "The hospital staff accessed the scans and then everything unravelled from there."
Just three weeks after first visiting his GP, Cain received life-changing news. He had alveolar soft tissue sarcoma (ASPS), an extremely rare form of soft tissue sarcoma that typically affects young adults.
"I'd never heard of it before," he says. "It was tough hearing that I have cancer, but from the start I've tried to keep a good mental attitude."
For patients diagnosed with a rare cancer, the diagnosis is often only the beginning of the challenge. With limited treatment options available and little public awareness, finding the right path forward can be difficult.
"One of the biggest challenges was working out what treatment was actually going to work for me," Cain says. "The treatments available under the PBS weren't for my type of cancer."
Determined to explore every possible option, Cain and Lucy began researching extensively.
"We got some information from the hospital, but most of it came from our own research online," he says. "Lucy spent a lot of time researching the best treatment options for me."
That research proved invaluable. Through connecting with another Australian living with a similar sarcoma diagnosis, they learned more about immunotherapy and the potential role it could play in Cain's treatment.
Today, Cain travels from the Gold Coast to Icon Cancer Centre South Brisbane every three weeks for immunotherapy treatment under the care of medical oncologist, Dr Vladimir Andelkovic. Dr Andelkovic says rare cancers like ASPS often require a highly individualised approach to care.
Alveolar soft tissue sarcoma is an uncommon cancer and can present unique treatment challenges because there is often less clinical evidence available than for more common cancers.
For patients with rare cancers, it's important that treatment decisions are carefully considered and tailored to the individual. Advances in therapies such as immunotherapy are creating new opportunities for some patients and highlight the importance of ensuring people have access to specialist care and expert advice.
While treatment has become part of Cain's routine, the diagnosis has reshaped many aspects of his and Lucy’s life.
"It's caused a lot more stress in our lives, but it's also brought us closer together," he says. "We’ve had to change our lifestyle."
Gone are the weekends spent partying with friends. Instead, Cain has found himself focusing on what matters most.
"I don't drink anymore. Life is a lot quieter now," he says. "My priorities have changed. I spend more time with family and friends and appreciate those relationships more."
Throughout his cancer journey, support from loved ones has been invaluable.
"I'm lucky to have a strong support network around me," Cain says. "Lucy, my grandmother and my friends have all been there for me."
He's also grateful to his employer, who has supported him throughout treatment while he continues working as a mechanic.
"My bosses have been great," he says.
Reflecting on his experience, Cain hopes greater awareness of rare cancers will lead to improved treatment options and support for future patients.
"There are so many different cancers out there, and I wish there was more awareness for the lesser-known types of cancer," he says.
He recognises that not everyone has the same ability to access treatment.
"I'm fortunate that I've been able to manage the cost of treatment, but I know there are people out there who can't."
For anyone newly diagnosed with a rare cancer, Cain has one clear message.
"Do your research," he says. "There are a lot of different options out there, and you need to understand all of them. Make sure you explore every avenue."
Dr Andelkovic agrees that knowledge and support are critical for patients navigating a rare cancer diagnosis.
"A rare cancer diagnosis can feel overwhelming and isolating," he says. "Connecting patients with specialist care, reliable information and supportive networks can make a significant difference to both treatment decisions and quality of life."
Nearly two years after his diagnosis, Cain continues to face the future with determination, supported by those around him and hopeful that greater awareness and research will improve outcomes for others living with rare cancers.
For people diagnosed with rare cancers, access to trusted information, advocacy and support can be critical.
Through its partnership with Rare Cancers Australia, Icon Cancer Centre is helping raise awareness of rare and less common cancers while supporting efforts to improve access to information, treatment options and patient support services.
