Canberra mum Sarah McGoram says being diagnosed with a rare cancer is more common than people think.
But people with a rare cancer are often left alone to fight - and pay - for their own health battle.
"When people hear the word 'rare', they often imagine a handful of patients scattered across the country," Sarah, 48, said.
"The reality is very different. Collectively, we are not rare at all. Yet our survival remains significantly worse than those of people diagnosed with common cancers."
In Australia, one in four cancer diagnoses are rare. Someone is diagnosed with a rare or less common cancer every 12 minutes. Every 30 minutes, someone dies from one.
Rare Cancers Awareness Day is on Friday. On Thursday, the word "rare" was spelt out in front of Parliament House and the High Court and landmarks were lit up in blue, to draw attention to the challenges faced by people with rare cancers. And what often unites people with a rare cancer is the feeling of being on the outer.
Their diagnosis may be delayed because of vague or misunderstood symptoms. There may be less research about their cancer. There could be fewer treatment options and limited clinical trials. And they likely face enormous medical bills because the drugs they need are not on the Pharmaceutical Benefits Scheme.
For Sarah, her whole adult life has been spent trying to keep herself alive.
When she was 18, she was diagnosed with a rare cancer a rare cancer called Gastrointestinal Stromal Tumour (GIST). Since then she has endured countless surgeries, transfusions, scans and procedures. Only three weeks ago, she was back in hospital after a mass haemorrhage.
Sarah, who can no longer work as a teacher, has also had to crowdfund to pay for her medication in the past and may have to do so again soon.
The drug she is on now was only listed on the Pharmaceutical Benefits Scheme through her lobbying and advocacy when Greg Hunt was the federal health minister.
"Were it not for that, it would cost $16,000 a month and instead it's $25 a month, but we don't know how long it's going to work for," Sarah's husband Tom said.
Sarah, who lives in Franklin with Tom and their 19-year-old son George, will find out in a few weeks if she needs to go to the next level of treatment and if another crowdfunding campaign needs to be launched to pay for it.
"There are multiple treatments available and none of them are on the PBS," she said.
"But there's medical and research evidence that they are effective and they're on the PBS for other more common cancers. On average, it's about $120,000 a year for most of the therapies I've been looking at."
Sarah and Tom were buoyed on Thursday after a meeting at Parliament House with ACT independent senator David Pocock and speaking to him about getting more equitable treatment for people with a rare cancer.
"We're grateful for his interest in the issue and his support for the cancer community," she said.
For years, Sarah has channelled her experiences into advocacy, highlighting systemic inequities in access to treatment, support and information for people with rare cancers. It hasn't been easy. And it's still not easy.
"The only reason I've been able to live as long as I have is because I've had to advocate so hard and my family have helped fund treatments," she said.
"My sister used up all her sick leave to support me. Tom has used up all his long-service leave. The whole family is just burning their leave and money to try to keep me afloat and get treatment that is already readily available to other patients. It's just unfair. It's so unfair."
Rare Cancers Australia chief executive Christine Cockburn said the 120 people diagnosed every day with a rare cancer needed to be seen and heard.
"People are so isolated and they don't realise, together, they are a lot," she said.
