This week is Neglected Cancers’ Awareness Week – bringing attention to those rare and less common cancers that are collectively responsible for 1/4 of all cancer patients.
By definition Rare and Neglected Cancers are those that affect around 200 in 100,000 Australians a year. These cancers are responsible for around a quarter of all cancer patients yet account for closer to half of all cancer deaths.
Rare cancers is a term which encompasses both rare and less common cancers. According to Cancer Australia rare cancer is defined as a type of cancer that has less than 6 incidences per year per 100,000 population. A less common cancer is defined as one that has between 6 and 12 incidences per year per 100,000 population.
In 2017 a Senate Enquiry was held in to into Funding for Research into Cancers with Low Survival Rates – bringing much needed attention to rare and less common cancers.
With 6 of the 12 cancers with the lowest 5-year survival rates found along the gastro-intestinal tract, the GI Cancer Institute is committed to continuing its work to improve treatment options for those patients diagnosed. Our research priorities as outlined by our Scientific Advisory Committee in December last year have a strong emphasis on rare cancers including the development of a rare cancer model to apply to GI cancer research going forward.
Why focus on neglected cancers?
The GI Cancer Institute is actively supporting vital clinical trials research into these neglected and rare cancers affecting the Gastro-Intestinal tract.
- Gastro-intestinal (GI) Cancers account for 3 of the 8 cancers with the highest mortality rates: pancreatic, liver and oesophageal
- 6 of the 12 cancers with the lowest 5-year survival rates are GI cancers: pancreatic, liver, oesphageal, stomach, gallbladder & bile ducts, and other digestive organs. *
- Rare & less common cancers only receive 13.5% of research funding and 12.6% of funding for treatments through the Pharmaceutical Benefits Scheme.
The good work that has been conducted by way of clinical trials research over the past 20+ years has delivered improvements, as evidenced by an increase in survival rates. However, more needs to be done to lift the overall 5-year survival rate above 50% and ideally closer to 90%+, similar to what has been achieved for breast and prostate cancer.
What is it like having a neglected cancer?
People who are diagnosed with neglected cancers have fewer treatments available. The experience can be isolating – even being diagnosed with these cancers can take months.
Read how four neglected cancer survivors reflect on their experiences:
- Sarah McGoram: Gastro-Intestinal Stromal Tumour
- Jan Mumford: Pancreatic Neuroendocrine Tumours
- Matt Simpson: Linitis Plastica – Stomach Cancer
- Raymond Yong: Cholangiocarcinoma (biliary tract cancer)
- Bob Geaghan: Oesophageal cancer
Can these outcomes change?
The survival outcomes for rare and neglected GI cancers are rising, as shown in graph below comparing survival rates from the mid-1980’s to now. This is largely due to surgical advances along with research in to new treatments and some critical breakthroughs. However, for these rare and neglected GI cancers the five-year survival rates are still all below 30% meaning more work is needed to provide those diagnosed with hope now and in to the future.
The GI Cancer Institute conducts clinical trials and research to find better treatments for these cancers and give hope to patients in the future.
With incidence levels low undertaking research to prove new treatments to be effective is often difficult however the GI Cancer Institute is committed to continuing to work towards delivering improved treatment options and better outcomes for those diagnosed.