Tenielle thought her surgery was just a precaution. Then she woke up

As Tenielle Jordan was wheeled into an operating theatre, her gastroenterologist told her not to worry. The colonoscopy was just precautionary, there wouldn’t be anything in there to find.

Then she woke up.

“He said: ‘We found a tumour, and it looks like cancer’,” Jordan recalls. “He was so upset. I felt so bad for him that he had to tell me. I had just turned 33.”

For seven months, she had been vomiting uncontrollably after every meal. She was misdiagnosed with a condition called delayed gastric emptying.

It would be another two years before she was diagnosed with a rare type of bowel cancer, which had spread through her abdominal organs.

Australians with rare and less common cancers face a greater risk of death and misdiagnosis, as well as higher out-of-pocket costs, than people with common malignancies, in what has been called a “cancer lottery”.

Meanwhile, the body responsible for recommending medicine subsidies has balked at the opportunity to make more people with rare and less common cancers, many of whom are under the age of 50, eligible for immunotherapy on the Pharmaceutical Benefits Scheme (PBS).

On Monday, Rare Cancers Australia (RCA) will deliver a report at Parliament House confirming entrenched inequity – half of people with rare or less common cancers report their symptoms were dismissed, and one in four were misdiagnosed.

Its nationwide survey of 2500 adults diagnosed with cancer and their carers, including three-quarters of people with rare or less common cancers, found one in five waited more than six months from their first medical appointment to get cancer testing, and one in 14 waited more than three years.

Conversely, 88 per cent of people with common cancers were tested within three months.

RCA chief executive officer Christine Cockburn said the report’s findings were “shocking but not surprising”.

“Patients are still stuck in a broken, lotto-like system that helps some and leaves others behind,” she said.

Common cancers have an overall five-year survival rate of 77 per cent, compared with 45 per cent for less common cancers and 62 per cent for rare cancers.

“What makes this even more devastating is that we know that there are more young people being diagnosed with cancer,” Cockburn said.

The risk of being diagnosed with cancer before age 40 has more than doubled since 2000, and one in nine new bowel cancer cases now occur in people aged under 50.

Jordan underwent surgery in March 2022 to remove her tumour and 21 centimetres of her bowel. She had a serious complication that left her reliant on a temporary stoma (a disposable bag fitted to an opening in her abdomen to collect bodily waste), then had 12 rounds of chemotherapy before she turned 35.

In January 2023, she was told that her scans were clear.

“They said: you’re cancer-free. Good luck with your life. See you never.”

But that wasn’t the case. Just over a year later, her cancer had spread. She endured a 13½-hour surgery to remove her cervix, ovaries, gallbladder, spleen, more of her intestines and parts of her abdominal wall. The space left behind was filled with heated chemotherapy to kill off residual cancer cells.

It was only then that genomic testing showed Jordan had the BRAF mutation, which accounts for 8 to 10 per cent of bowel cancers.

“It was in the tumour from the start,” Jordan said. “But it’s not protocol to test for genomic mutations until [the cancer] is stage four.

“Surely if they knew earlier – two years ago – we could have monitored it and caught it before it metastasised so extensively.”

Jordan’s advanced cancer is treatable but not curable, and treatment is not without side effects. She entered menopause at 35 years of age, and her body cannot absorb iron, leaving her constantly exhausted.

The Pharmaceutical Benefits Advisory Committee (PBAC) last month knocked back an application to list the immunotherapy drug Keytruda on the PBS for cancer patients based on their genomic biomarker, regardless of the organ in which their cancer originated, which would have made it accessible to more people with rare and less common cancers. PBAC also deferred a similar submission for immunotherapy drug Opdivo.

“We are disappointed and frustrated,” Cockburn said of the decision.

RCA’s report recommends stronger data collection, genomic-led care, equitable access to diagnostics, therapies, personalised care and greater financial support for people with rare and less common cancers.

Federal Health Minister Mark Butler said the Albanese government was committed to delivering equitable, world-leading cancer care and had invested heavily, in line with its Australian Cancer Plan.

“We know patients want faster access to cutting-edge medicine and treatments. That’s why our government is working through the recommendations of the [Health Technology Assessment] review,” Butler said.

The government has endorsed 31 of 41 recommendations from the Senate inquiry into equitable access to diagnosis and treatment for people with rare and less common cancers.

Jordan doesn’t think she will ever make peace with the fact that her diagnosis was just unlucky.

“But what I hope is that we can change something for the next 33-year-old who gets this diagnosis,” she said.

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