New research highlights substantial impact of rare cancers in Australia

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New research, released by Cancer Council, has highlighted the immense collective health impact of rare cancers on the Australian population.

The research revealed that rare cancers collectively account for 22% of all invasive cancer diagnoses and 27% of all cancer-related deaths in Australia between 2007 – 2016. That is, more than 1 in 5 cancers diagnosed was a rare cancer type, and survival was relatively low at around 53%.

Rare cancers include many individual cancer types that are typically diagnosed among a very small number of people. This means that their diagnosis and treatment are often complex and require specialist care.

Cancer Council Queensland researchers, in collaboration with experts from Queensland University of Technology (QUT) and Western Australia Cancer Registry, utilised data from eight population-based cancer registries in Australia over the period of 2007 to 2016.

They found substantial evidence that incidence and survival of rare cancers varied markedly between small geographical areas across Australia, showing that remote and disadvantaged areas had higher incidence and lower survival.

These findings have recently been published in a paper titled Geographical and spatial disparities in the incidence and survival of rare cancers in Australia, in the International Journal of Cancer.

Speaking to the findings, Cancer Council Queensland researcher and senior author Professor Peter Baade said, “Since treatment for rare cancer types requires specialist care found in major cities, the logistical challenges to more effective diagnosis and treatment for people living in rural and disadvantaged areas need to be addressed.”

Distinguished Professor Kerrie Mengersen, Director of the QUT Centre for Data Science, and co-lead on the Australian Cancer Atlas, explained the need for further research to address these disparities “These results provide motivation to better understand why these geographical patterns exist, and thus inform the development of strategies to achieve improved outcomes for all Australians diagnosed with a rare cancer type.”

Duodenal cancer survivor and Cairns local, Wayne Reynolds, is all too familiar with the daunting reality of receiving a rare cancer diagnosis. Wayne was feeling fit and healthy at 50, with a half marathon under his belt while training for a half ironman triathlon when his world was rocked by his diagnosis.

“It was kind of weird the way it first came about, I got really itchy and my wife noticed that I was starting to go yellow in my eyes and across my skin. I felt fine, apart from the incessant itching, and got myself off to the doctors, who sent me straight to the emergency department with painless jaundice,” Wayne said.

It was at this point that Wayne was presented with a potential pancreatic cancer diagnosis, and a five per cent survival rate.

“It was pretty grim at that point in time. From there I had a number of tests and ended up getting transferred to Townsville base hospital.”

Wayne explained the test results came back to show that he had duodenal (small bowel) cancer, “It was about 10 millimetres away from my pancreas, thankfully. Certainly, a lot better outcome than pancreatic cancer. But from there it was a rollercoaster, emotionally, still dealing with the fact that I had cancer.”

It was an incredibly harrowing time for Wayne and his family, with his GP at the time sharing he’d never seen a case of this rare cancer in his 30 years of experience. With a lack of information and many unknowns ahead of him, Wayne turned to his own research where he found Cancer Council’s rare cancer resources. These outlined information for Wayne on his rare cancer, what he could expect and who to go to for more information.

This helped calm his nerves during a very challenging time, but he continues to stress the need for further information, resources and support for rare cancer patients, especially once they’re out of the hospital and healthcare system.

“Travelling away from home and leaving the kids in Cairns added to the stress of the situation but I am grateful that I could access the lifesaving treatment. I know that not everyone is so lucky, especially patients that are in rural and regional communities,” said Wayne.

“It’s important that the challenges standing in the way of effective diagnosis and treatment for people living in rural and disadvantaged areas is addressed so that everyone can have their best chance of surviving like I did.”

Professor Peter Baade explained “These results hopefully provide motivation to better understand why these geographical patterns exist, and thus inform the development of strategies to achieve improved outcomes for all Australians diagnosed with a rare cancer type, regardless of where they live.”

Deputy Chair of Cancer Council’s Supportive Care Committee, Danielle Spence, emphasised the imminent need for more funding within this space.

“Wayne’s cancer journey, and continued experience with long term effects of his cancer, and this new research serve as a reminder that our work isn’t done in ensuring equal access to cancer care and support for rural and remote Australians.”

“By investing in research and enhanced support for people with cancer, together we can help reduce the impact of cancer for more Australians. Cancer Council provides vital information and support services to people with cancer, and we know that those in regional, rural and remote areas really rely on our services. Investing in research and supportive care would make a difference to people living with cancer and save more Australian lives.”

The research Geographical and spatial disparities in the incidence and survival of rare cancers in Australia, has been published in the International Journal of Cancer and can be accessed here https://onlinelibrary.wiley.com/doi/10.1002/ijc.34395

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