Icon Cancer Centre and Rare Cancers Australia partner to improve outcomes for patients living with rare cancers

Icon Writers / 07 Jun, 2024

Did you know that 1 in 4 cancers diagnosed in Australia are rare or less common? And that rare and less common cancers account for more than one third of all cancer deaths?

In the lead-up to Rare Cancers Awareness Day, Icon Cancer Centre Australia and Rare Cancers Australia (RCA) are partnering to provide greater awareness and support for patients living with rare and less common cancers.  

Rare cancers are those with an incidence of fewer than 6 cases per 100,000 population and less common cancers are those with 6 to 12 cases per 100,000. Together, they account for 27% of all cancer diagnoses and 37% of cancer deaths in Australia. A cancer is rare or less common if:   

  • It is very unusual and seen in very few people.
  • It is diagnosed much younger or older than people who are typically diagnosed with it.
  • It affects children.
  • It is a common cancer in an unexpected location, such as a melanoma that started in the eye.
  • It started somewhere unexpected, such as in bones.
  • It is usually diagnosed early but has been found at an advanced stage, such as stage 4 cervical cancer.
  • It is a small sub-type of a common cancer, such as metastatic triple negative breast cancer.

RCA is a charity dedicated to awareness and support to understand the challenges faced by patients with rare and less common cancers. RCA offers emotional, peer, practical, social and clinical support for patients, along with financial resources to help manage the costs of accessing treatment.

When someone is diagnosed with cancer, it is often accompanied by a plan. Their GP will give them information about their cancer and support services, send them for further testing and write a referral to a specialist.

But what if the cancer is so rare that standard treatment does not yet exist? While more common cancers usually have a medical team or specialist, what happens when there doesn’t seem to be a designated expert for the type of cancer?

“A rare cancer diagnosis turns a person’s world upside down. It can leave them feeling lost, isolated, and looking for answers – and not many people have them,” says CEO of RCA, Christine Cockburn.

“At RCA, we give a patient the answers they need, connect them with the best healthcare and stand in their corner.

“We put patient outcomes at the centre of all we do. We ask them what they need help with and adapt to solve their specific set of needs. There is no set and forget processes, only unique and personalised whole-person support.”

A rare or less common cancer diagnosis can often mean high costs and limited support, education and treatment options due to the limited knowledge, expertise, research and funding.

“Everyone deserves access to quality cancer care and support, yet despite one in four cancers diagnosed in Australia falling into the rare or less common cancer categories, these patients don’t have access to the same level of support as those diagnosed with more common cancers,” says CEO of Icon Cancer Centre Australia and New Zealand, Paul Fenton.

“Patients diagnosed with rare or less common cancers often face unique challenges and their journey can vary greatly from other cancers. We’re proud to partner with RCA to provide patients with additional support to help them navigate this difficult time in their lives.”

Icon Cancer Centre is a proud supporter of this year’s Rare Cancers Awareness Day, which is held annually on 26th June.

Throughout June, we will be joining RCA to pledge our support for Australians affected by a rare or less common cancer and improve awareness of these cancers and the challenges patients face.

To pledge your support for people living with rare or less common cancers, visit: https://give.rarecancers.org.au/rare-cancers-awareness-day

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