The diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results of a serious illness like cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs can be abrupt and alarming. It is common to feel lost and in need of guidance and information. Sometimes there is a degree of certainty – a diagnosis, reliable information, a community on which you can call. And importantly a team who reassure you that you will receive the optimal standard of care.
But what if your cancer diagnosis causes your clinicians to scratch their heads? What if right from the start, you are beyond the standard of care – there is no optimal pathway? Whilst some cancers are supported by clinicians and dedicated specialist nurses, rare and less common (RLC) cancer patients are often left to their own devices. Very little information, that is difficult to find, often leaves people doing their own research and navigation. It can be a terrifying, isolating time.
Whilst rare cancers individually can be tiny patient numbers, added all together with less common cancers, there are over 200 different diseases. They make up half of all cancer diagnoses and contribute to one third of all cancer deaths – a very significant impact. It is an ongoing challenge to gather data from small patient groups who typically have poorer outcomes than common cancers, thus creating roadblocks to medicine access. There is also a strong likelihood that a RLC cancer experience will leave you seriously out-of-pocket. Compounding these problems is the significantly smaller slice of the research funding pie… you get the idea.
It isn’t hard to see why in 2012 our founder Kate Vines’ oncologista doctor who specialises in the study, diagnosis and treatment of cancer suggest she and her husband, Richard start a charity to support all those with rare and less common cancers. Here we are, eight years on and our mission has never been clearer: to improve the lives and outcomes of those affected by RLC cancers.
How are we doing it?
You’ve heard the story of the boy and his dad walking along the beach? They are met with starfish strewn as far as the eye can see; the little boy picks one up and throws it back into the ocean. “Don’t bother, son, there are too many, you can’t make a difference to them all.” The boy picks up another star fish, throws it into the sea and says, “I made a difference to that one.”
We love this story; it perfectly illustrates our approach to patient support and drives our patient care team.
But there is another part to that story…. What if we could raise the tide?
The truth is that the healthcare system just isn’t fit for small patient populations, quite simply they don’t fit the current models and subsequently 52,000 are quite literally left stranded on the beach. Our advocacy work endeavours to raise the tide, and as we love to put it, make it fair for rare.
RCA’s Patient Care Team are specialist navigators. There is no challenge having a rare cancer brings that we wont walk with you to solve. We understand that things can get complicated and you need support, compassion and hope. You are not alone; we are your community; Rare Cancers Australia is with you.