Page last updated: August 2024
The information on this webpage was adapted from Understanding Rare and Less Common Cancers - A guide for people with cancer, their families and friends (2024 edition). This webpage was last updated in August 2024.
Expert content reviewers:
This information was developed with the help of a range of health professionals and people affected by rare and less common cancers:
- Emeritus Professor Phyllis Butow, Psychologist, The University of Sydney, NSW
- Alison Danis, Consumer
- Dr Michelle Harrison, Medical Oncologist, Chris O’Brien Lifehouse, NSW
- Dr Damien Kee, Medical Oncologist, Austin Health and Peter MacCallum Cancer Centre, and Clinical Research Fellow, Walter and Eliza Hall Institute, VIC
- Jess Pike, Senior Social Worker, Westmead Hospital, NSW
- Trish Taylor, Consumer
- Lesley Woods, 13 11 20 Consultant, Cancer Council WA
Depending on the RLC cancer type 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.
Some people with cancer will have one treatment, but often people need a combination of treatments (e.g. surgery and targeted therapy). Treatments may sometimes be given at the same time.
Your specialist will work with the multidisciplinary team to recommend the best treatment options for you. Learn more about treatments and their side effects.
Where will I have treatment?
To see specialist doctors or have specific treatment, people with an RLC cancer who live outside a major city may need to travel. Your doctor will let you know where the best place to have treatment is for you.
Rare Cancers Australia has a list of doctors and a list of Australian hospitals and treatment centres with cancer care services (for public and private treatment centres).
Depending on the RLC cancer type, there may also be a support organisation that you can contact for a directory of specialists and treatment centres.
If you need to travel far from home for treatment, some costs may be covered. For more information, ask your treatment centre, doctor or call Cancer Council 13 11 20.
What to ask about your treatment
Information may not always be easily available for an RLC cancer, so ask your treatment team about:
- what treatment options are available and if they are different to treatments for the more common cancer
- the aim of treatment – whether it is trying to cure the cancer or control symptoms
- how long treatment may take and where you will have it
- any risks, short-term and long-term side effects, and how they can be managed
- how treatment will impact your ability to work, do everyday activities or your quality of life
- how you will know if treatment is working
- what will likely happen if you do not have treatment
- what costs may be involved, such as out-of-pocket expenses not covered by Medicare or private health cover, and any options if you cannot afford to pay
- what impact treatment may have on your sex life and fertility. Ask about any short-term or long-term side effects and ways to manage any changes.
Can I join a clinical trial?
Clinical trials of new treatments for RLC cancers are difficult to conduct due to the low number of patients. 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. Clinical trials 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 modified new treatment.
Over the years, trials have improved treatments and led to better outcomes for people diagnosed with cancer. You may find it helpful to talk to your specialist, clinical trials nurse or GP, or to get a second opinion.
If you decide to take part in a clinical trial, you can withdraw at any time. For more information, visit the Victorian Cancer Trials Link.
“As my cancer was so rare, there were no specific protocols to treat it.” Wayne
Living with advanced cancer
RLC cancer may be advanced when found, it may spread, or it may come back after treatment. There may still be treatments to remove the cancer or help control its growth.
Advanced cancer usually cannot be cured, but may be controlled with palliative treatment.
Treatment will depend on the cancer, how far it has spread, your general health, treatment goals or preferences, and quality of life.
Understanding Rare and Less Common Cancers
Download our Understanding Rare and Less Common Cancers booklet to learn more
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