Sarcoma: The forgotten cancer that is commonly diagnosed in children

By Sylvia Lee | Originally published 25 July 2022

A photo of Natasha (right), who has been diagnosed with osteosarcoma at 15 years old, with Zubin’s daughter, Alee (left), taken a few years ago.

When Zubin Appoo learnt that his 15-year-old niece, Natasha, had been diagnosed with osteosarcoma, he knew he had to do something to help. Although Australia is oceans away from the US, where Natasha lives with her family, the Sydneysider embraced fundraising to show his support of his niece and raise money for cancer research. 

If Zubin reached his goal of $16000, he would shave his head and beard. In just 48 hours he garnered an incredible outpour of support and raised $10,000. It only took him three weeks to reach his goal and since then, he has far exceeded his goal, raising an incredible $17,878.75 and counting! 

“Natasha was blown away by the donations that came flooding through, as was I! She did comment that she’d never had an uncle who had pink eyebrows, but I managed to convince her that shaving my beard and head was sufficient! Not sure if she’ll let that one go though…

“Prior to Natasha’s diagnosis, I actually knew very little about sarcoma, so it was an eye-opening experience,” he says. 

Amazing supporters like Zubin have a crucial role to play in helping to fund research and clinical trials aimed at improving patient outcomes, especially when it comes to rare cancer subtypes like osteosarcoma that tend to be underfunded. 

WHAT DO WE KNOW ABOUT OSTEOSARCOMA?

Osteosarcoma is a bone cancer and subtype of sarcoma, an extremely rare cancer type that develops in the bones and soft tissues. 

Commonly diagnosed in children, sarcoma is often dubbed the ‘forgotten cancer’ because less than 1% of cancer research funding is allocated to sarcoma. This is despite the fact that sarcomas are difficult to detect in the crucial early stages, where survival rates are highest, as well as complicated to treat, often involving an aggressive treatment regime. 

Every year, about 200 people are diagnosed with primary bone sarcoma in Australia. In 2021, an estimated 2,035 people were diagnosed with soft tissue sarcoma. 

Though sarcoma makes up only 1% of all adult cancers and 10% of cancers diagnosed among adolescents and young adults, it is one of the most common cancers affecting children, accounting for about 20% of cancer diagnoses. The 5-year survival rates of 70% for bone sarcomas and 67% for soft tissue sarcomas depend on the cancer stage, nature of the tumour/s, how patients respond to the limited treatment options, and whether patients have metastatic sarcoma, which is notorious for its poor patient outcomes. These 5-year survival rates have barely improved in the last thirty years, especially for patients with metastatic sarcoma. 

OUR WORK IN SARCOMA RESEARCH

As the only charity that funds early-career researchers of all cancer types, we are especially proud of our work in ensuring that rare and underfunded cancer types get the attention they require. 

Dr Mark Pinese, a 2018 grant recipient, is currently focusing on prevention and early diagnosis of sarcoma, when patients have a better chance at survival. He is investigating genetic factors that determine sarcoma risk, which will ultimately allow him to develop a reliable method of identifying high-risk individuals.

Another member of our alumni, A/Prof Fernando Guimaraes, who we named 2019 Researcher of the Year, is now an emerging immunology researcher who recently published a study exploring the use of NK cells as a novel treatment option for aggressive sarcomas that are resistant to conventional anti-cancer therapy. 

In Zubin’s words, “Supporting early stage researchers is critical. As a technologist, I see, nearly daily, that innovation comes from people attempting to solve old problems with new tools and new ideas. 

“Supporting early-career cancer researchers will likely hold the key to unlocking this mystery of the world.”