A person's cancer is as unique as their fingerprint
Imagine you’ve been diagnosed with a cancer so rare that nobody has even heard of it. That’s the reality for many people diagnosed with rare cancer. They must navigate a complex health system with limited information and little support, and often face huge financial burdens. It’s easy to see how these Australians can feel isolated, scared and lost. That's why your support is so valuable.
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Stories of rare
“I had a cough I just couldn’t shake… it turned out to be a rare cancer. I felt worry, shock, fear and overwhelmed, all at once. It’s like my future hopes, dreams and plans were shattered within seconds. I wish I was more aware of rare and had not ignored that cough for so long.”
Noel, 37, diagnosed with a rare cancer
“There’s a real stigma in our community, and amongst medical professionals, about going to get your vagina checked if something is wrong. My experience was awful, I really had to fight to be taken seriously and advocate for myself, which was hard because I’m quite a shy person.”
Jane, 49, diagnosed with a rare cancer
“They found a large tumour in his chest and within a week he was having surgery. They told us he had a rare cancer. Hearing from his doctor that there’s nothing more they can do because his cancer is so rare, I won’t accept that. I won’t hear it, we must keep digging, keep looking, keep fighting.”
Cheyanne, carer for her husband who has a rare cancer
“Over one-third of all deaths from cancer in Australia are from rare or less common cancers. That’s 43 people who die every day from a cancer that you have probably never heard of. Rare cancers present differently to common cancers, the symptoms and causes are different and often it is younger, healthy men and women who are diagnosed with them.”
Rebecca, Specialist Cancer Navigator
Become aware of rare
Early detection is key. Having the right information can help you know what signs and symptoms to look for and to advocate for yourself when something isn't right. Building your own awareness also helps you understand and better support others in your life who may be facing rare cancers.
Meet Jane
Jane was told her fevers and pain were related to perimenopause. After finally taking a look herself, she was diagnosed with stage 3 vulval cancer.
Meet Noel
Noel was fit, healthy and active when he developed a cough that wouldn't go away. His world changed when he was diagnosed with stage 4b thymic carcinoma.
Meet Cheyanne
For Cheyanne, seeing her husband face a rare cancer with limited treatment options has been heartbreaking, but she is determined not to take "no" for an answer.
Meet Rebecca
As a Specialist Cancer Navigator, Rebecca says it is often younger, healthier people diagnosed with rare cancers. She encourages people to empower themselves with knowledge.
Common challenges of rare cancer
Any cancer diagnosis can turn your world on its head - but rare cancers bring additional challenges that can leave people feeling isolated, confused and alone.
Late diagnosis, unclear prognosis
Inequity in survival outcomes
Exorbitant out-of-pocket costs
Limited treatment options
Delayed access to medications
Limited information available
Limited access to expert knowledge
Limited rural and remote services
Other ways to show your support
Spread the word
We’ve put together some handy resources to help you raise awareness about rare cancers, using #AwareOfRare. Check out our social media assets, printable posters, email footers and more.
Wear your rare
You can raise awareness of rare cancers by wearing your rare. Check out our online shop for hoodies, t-shirts, hats and more to show your support for the rare community.
Share our resources
Download the social media tiles below and help spread the word. Be the beacon of hope for those living with a rare or less common cancer.
Awareness
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Stories of rare
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Rare facts
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Pledge for rare
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Why people with rare cancers need our support
A cancer diagnosis can be abrupt, alarming and have a devastating impact on patients and their loved ones.
When patients are diagnosed, 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?
When other cancers usually have a specific medical team or specialist, what happens when there doesn’t seem to be a designated expert for this type of cancer?
It’s a terrifying position to be in as a patient, and one that many Australians with rare, less common and complex cancers face every day.
Rare Cancers Awareness Day proudly partners with Icon Cancer Centre
Icon Cancer Centre is part of Icon Group - Australia’s largest dedicated cancer care provider. The Group has expanded globally into Malaysia, Singapore, Mainland China, New Zealand and the UK. Icon has a strong history of cancer research, now operating the largest private cancer clinical trials program in Australia.
Icon has more than 40 cancer centres across Australia and is committed to delivering the best care possible, to as many people as possible, as close to home as possible.
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Inside Rare is our monthly newsletter, providing articles, highlights and updates on what is happening at RCA and the rare cancers community.
