A cancer diagnosis is a life-changing event, and it is common to feel shocked or upset. Being told that the cancer is rare or less common may be particularly challenging.
A rare or less common (RLC) cancer may take longer and be more difficult to diagnose than other types of cancer. It may also be found at a late stage (advanced).
What is a rare cancer?
A rare or less common cancer is a type of cancer that affects a small number of people.
A cancer may be considered rare or less common when it:
- is a subtype of a more common cancer (e.g. lymphoma is common; T-cell lymphoma is rare).
- is a common cancer in an unusual part of the body (e.g. melanoma is common, but melanoma found in the eye, called ocular or uveal melanoma, is rare).
- is in a part of the body where it is unusual to find cancer (e.g. the bones).
- started in a different type of cell than usual.
- is more common to find this cancer in the opposite sex (e.g. breast cancer in males).
- is found in a person younger than expected (e.g. prostate cancer in someone under 40).
How many Australians have a rare or less common cancer?
A rare cancer means fewer than 6 out of 100,000 people who are diagnosed with cancer have this type.
A cancer is less common if 6-12 out of 100,000 people are diagnosed with this type.
Did you know? There are a large number of different types of rare or less common cancers. Although only a small number of people are diagnosed with each RLC cancer type (e.g. small bowel, gall bladder), together, they all add up to a large number.
Each year, it’s estimated that about 52,000 Australians are diagnosed with a cancer that is considered to be rare or less common. Almost 1 in 3 people diagnosed with cancer will have a rare or less common cancer.
The number of people diagnosed with a RLC cancer is increasing. While the incidence of certain RLC cancer types may be on the rise, this overall increase in numbers may also be partly due to:
- improvements in diagnosing different types of cancer;
- advances in testing (including genetic testing); and
- early detection thanks to more accurate cancer screening.
Learn about how rare or less common cancers are diagnosed .
Molecular and genetic testing
Every cell found in the human body has about 20,000 genes, which tell the cell what to do and when to grow and divide. Cancer starts because of changes to the genes (known as mutations).
Some people are born with a gene change that increases their risk of cancer (inherited faulty gene), but most gene changes that cause cancer happen during a person’s lifetime (acquired gene changes).
For some people with a RLC cancer, doctors may recommend extra tests to look for acquired gene changes (molecular tests) or inherited gene changes (genetic tests).
For some cancers, molecular or genetic tests may help make a diagnosis or guide your doctor to the most effective treatment.
Learn more genetics and risk
Treating rare and less common cancers
Depending on the type of cancer or how advanced it is, treatment may include:
You may also be offered newer treatments, such as cell and gene therapies or personalised cancer vaccines. Treatment is sometimes part of a clinical trial.
Clinical trials for rare cancers
Clinical trials are research studies that test new or modified treatments to see if they are better than current methods. For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the new treatment method being tested. Over the years, trials have improved treatments and led to better outcomes for people diagnosed with cancer.
While clinical trials are important for all cancer types, they can be uniquely important for people with RLC cancers. This is because there are fewer effective, standard treatment options available and clinical trials are vital to the development of new approaches. Clinical trials can also provide access to treatments that might not otherwise be available. [1], [2], [3], [4]
Clinical trials of new treatments for RLC cancers can sometimes be difficult to conduct due to the low number of participants. This is because clinical trials usually rely on large groups of people who have a similar condition.
However, if there is a suitable clinical trial available, your doctor or nurse may suggest you take part. You can also search for an available clinical trial and check with your doctor about whether you might be eligible to be involved.
You may find it helpful to talk to your specialist, clinical trials nurse or GP, or to get a second opinion. You may also like to speak with someone who has been through a clinical trial before.
Learn more about clinical trials.
Rare cancer trials in Victoria
This list contains trials for some rare and less common cancers, including rare sub-types. However it may not include all available trials. You can also search for a trial by cancer type or using a keyword.
Further information and support
Rare cancer resources
Rare Cancers Australia (RCA)
RAC are the primary advocacy and support body for RLC cancers. National peak body providing trusted information, support services, patient guides, and advocacy for people affected by rare and less common cancers.
They also provide:
- Knowledge base: a comprehensive tool to search for specific cancer types and find relevant clinical trials and support services.
- Patient support program: provides access to specialist cancer navigators who help you understand your diagnosis an navigate the healthcare system
- Patient treatment fund: a dedicated crowdfunding platform to help families cover treatment, travel, and accommodation costs not covered by Medicare.
Visit their website.
Rare Cancer Support Guide
A comprehensive guide covering diagnosis, treatment, clinical trials, and survivorship for people living with rare cancers. Available via their website.
Cancer Council peer support
A confidential, one-on-one phone support service where you can speak with someone who has had a similar experience.
Learn more or call 13 11 20 and ask about peer support.
Without a Ribbon
A rare cancer specific support network providing information and support for people with rare cancers.
Access their website for more information.
Resources for health professionals
Victorian Rare Cancers Clinical Trials Alliance (VRCCTA)
The Victorian Rare Cancer Clinical Trials Alliance (VRCCTA) is a statewide network dedicated to improving access to clinical trials for people living with rare and less common cancers. The VRCCTA brings together hospitals, researchers, and clinicians across Victoria to make it easier for patients—no matter where they live—to find and take part in clinical trials that may offer new treatment options.
By working collaboratively, the VRCCTA helps connect patients and families with relevant trials, supports doctors in identifying suitable opportunities, and raises awareness of available research. Their goal is to ensure that more people with rare cancers have equitable access to innovative therapies, closer to home, and with the support they need throughout their care journey.
Australian Rare Cancer (ARC) Portal
A clinician-led service offering expert advice, molecular testing support, treatment guidance, and access to clinical trial options for rare cancers (clinician referral required). People affected by cancer and their families may also wish to discuss reaching out to ARC with their treating doctors.
They offer:
- Expert advice: facilitates specialist advice on diagnosis, management, and clinical trial identification.
- Referral system: requires a referral from your treating specialist (not a GP). Once referred, a panel of experts reviews your case to find the best available clinical trial opportunities.
Learn more.
Rare and Less Common Cancers in Primary Care
This free online course by the VCCC Alliance and Rare Cancers Australia supports primary care professionals to better recognise and manage RLC cancers.