Tilly noticed a small lump on her ring finger. She had no idea it could have killed her.

In early 2013, Tilly Gorce had just started Year 12 when she first noticed a lump on her left ring finger. It was only little; a small smudge of raised skin. And it didn’t ache. So she pushed it to the back of her mind while she focused on finishing school.

The Perth student could not have predicted that almost two years later, her finger would need to be amputated after being diagnosed with a rare form of cancer, called epithelioid sarcoma.

The now 22-year-old went to get it checked by her GP in 2014, a few months after graduating. The lump was growing, and by this stage, it was about the size of a pea.

Tilly was sent to undergo several scans over a period of months, and referred to a plastic surgeon to have the lump cut off in late 2014. It was during this procedure that things suddenly escalated.

“[The surgeon] took some of the lump and he didn’t like the look of it,” Tilly told Mamamia.

“He said that it could be something more sinister, that I could actually have to have my whole hand removed. I was really worried, I thought ‘this cant be happening’.”

Soon later, she had her diagnosis: the small lump was an epithelioid sarcoma, a rare and aggressive malignant tumour which was in the nerves of her soft tissue, and it could take her life. The only treatment option was a radical amputation of her finger.

“When the results came back things turned from bad to worse… For some reason we knew in the back of our minds that it wasn’t going to be good,” Tilly said.

She said the only upside was that she wouldn't need to get chemotherapy. But she said she was terrified that not enough would be cut away from her hand to stop the cancer.

Tilly went in for her operation on November 11, 2014. She said the hardest part of her recovery wasn't adjusting to day-to-day tasks, but accepting the new appearance of her hand. At first, she isolated herself.

"I didn't feel comfortable going out... I wasn't confident at all, I didn't want to talk to friends, I didn't want my parents to tell anyone," she said.

Tilly eventually came across CanTeen - an organisation that funds research and supports young cancer sufferers - and rebuilt her confidence. She was also able to regain the strength in her hand within a few months.

Four years on from the surgery, Tilly is speaking out to help raise awareness for young Australians affected by cancer.

Each year, about 1000 adolescents and young adults aged 12-25 are diagnosed with cancer nationally. And sadly, it is this cohort that is disproportionately diagnosed with cancers that are rarer, and therefore more deadly.

CanTeen has published new research in the Medical Journal of Australia stating survival rate gains have been smaller for this age group than for children and older adults.

"Approximately half of the cancer types that affect AYAs still have five-year survival rates below 77 per cent," said CanTeen researcher Dr Pandora Patterson.

"For example, for [people aged 15-29] diagnosed with leukaemia in Australia between 2004-2010 the five-year survival rate was only 68 per cent, compared to 87 per cent in children aged 0-14, and 73 per cent in adults aged 30-39 years.

"There is growing evidence that cancers in adolescents and young adults have a unique biology."

CanTeen is calling for a coordinated national approach and greater funding for rare and low survival cancers in young people.

Among the initiatives they'd like to see are a government-developed strategy for research into prevention, early detection and treatment, as well as a government-funded taskforce for rare and low survival cancers.

Adolescents and young adults also have much lower access to clinical trials in Australia. Only 4-8 per cent of this age group of cancer patients participated in trials compared to 40 per cent of children.

"Taking part in an early phase clinical trial is the fastest way to access cutting-edge cancer treatment, but young Australian cancer patients have been missing out on this opportunity," Dr Patterson told Mamamia.

Tilly, meanwhile, hopes her story helps remind people to be vigilant about health checks.

"Just be aware of any strange lump or bump or persisting pain. Get it checked, please get it checked," she said.

"If I had known sooner... I probably would have had less of an amputation. Had I left it longer, I could have had my hand off.

CanTeen Australia is hosting the 3^rd Annual Global Adolescent and Young Adult Cancer Congress from December 4-6 in Sydney. It encourages thought leaders, oncology specialists, researchers, innovators and young people from around the world to come together to discuss and drive a global approach to improve youth cancer outcomes.