Rare Cancers

Having a rare cancer can be challenging. Often rare cancers are difficult to diagnose, with fewer treatment options available.

At Icon, we are committed to furthering research in advanced rare cancer treatments and providing hope, access and opportunity for people with rare and less common cancers.

What is a rare cancer?

Rare cancer accounts for approximately one third of all cancers and half of all cancer deaths in Australia. 1

Rare cancers can be defined as: 1

  • Less common – cancers with an incidence of between six and 12 per 100 000 Australians each year
  • Rare – cancers with an incidence of less than six per 100 000 Australians each year
  • Super rare – cancers with an incidence of equal to, or less than, two per 100 000 Australians each year, which equates to less than 480 Australians.

There are hundreds of different types of rare and less commons cancers. Rare Cancers Australia states that most cancers, with the exception of breast, prostate, bowel, lung and melanoma, can be classified as rare or less common. 2

Treatment for rare cancers

Depending on the type of rare cancer you have, your treatment options may include conventional methods such as surgery, radiation therapy, chemotherapy, immunotherapy and targeted therapies, or new treatments through clinical trials.

Many significant advances in cancer treatment have occurred over the last 30 to 40 years, including in early detection, surgery, radiation therapy and chemotherapy. Immunotherapy is the next step forward in cancer treatment for rare and difficult to treat cancers, helping people when traditional treatment methods aren’t effective or suitable.

As certain cancers respond better to different forms of cancer treatment, research is currently focused on establishing whether immunotherapy or a different form of treatment is most effective for specific cancers.

We have a range of special interest doctors at Icon who can guide you towards the best treatment for you, your cancer and your preferences.

Research and rare cancers

Icon is committed to delivering clinical trials and research programs to our patients, offering Australia’s largest private cancer clinical trials program. Our phase 1 trial program plays an important role in providing new and novel therapies to people with rare and less common cancers in Australia.

Clinical trials are particularly valuable for people with rare cancer as they provide hope and opportunity for people who are unable to access standard or approved therapies. By participating in a clinical trial, rare cancer patients have the opportunity to access a potentially lifesaving treatment and help advance cancer treatment for all Australians.

For more information about Icon’s clinical trials and the phase 1 trials program, click here.

Support for people with rare cancer and their families

Rare Cancers Australia is a not-for-profit organisation dedicated to improving the lives and health outcomes of Australians living with rare and less common cancers. They offer several services including patient support programs, a community for people living with rare cancer and their families, and research and fundraising efforts to assist with the costs associated with rare cancer treatments. We encourage you to visit the Rare Cancers Australia website or contact them directly by calling 1800 257 600.

Frequently asked questions

What is immunotherapy?

Immunotherapy uses your own immune system to attack cancer. As cancer is able to trick the immune system into thinking it is a normal healthy cell, immunotherapy works to switch off those mechanisms. Checkpoint inhibitors, a new form of immunotherapy, are medicines that help the immune system respond more strongly to a tumour by releasing “brakes” that keep T cells (a type of white blood cell and part of the immune system) from killing cancer cells. These treatments take off the “protective clothing” that cancer cells use to disguise themselves from the immune system, making them visible and able to be targeted. Checkpoint inhibitors have significantly improved outcomes for some of the more difficult to treat cancers, such as lung cancer and melanoma. Although still in the early phases, the next steps in immunotherapy focus on harnessing your own cells, known as CAR T-cell therapy, to target and destroy cancer cells directly. For further information, visit our Immunotherapy page.

After a clinical trial ends, how long does it take to access medication?

The length of time it takes for medication to become publically available depends on the success of the clinical trial. In Australia, medication goes through an approvals process which generally takes about 12 months, before proceeding to PBS funding review. Participating in a clinical trial plays a significant part in this process, as your experience provides evidence to the PBS on the effectiveness of the medication. If you participate in a clinical trial, in most instances you’re able to continue taking the medication for as long as it’s effective, even if the trial has concluded.

How do you participate in a clinical trial?

To become involved in a clinical trial, it’s important to talk to your doctor about what might suit you and your cancer. Cancer advocacy groups can also point you in the right direction, or you can search for a clinical trial online on the Australian Clinical Trials website.

How much does it cost to participate in a clinical trial?

Generally there is no cost in being involved in a clinical trial. Often participating can benefit people with cancer, as clinical trials provide access to medication that may not otherwise be available free-of-charge.


For a full list of references, click here.
  1. Rare solutions – a time to act. (2017). Rare Cancers Australia. Retrieved on 3 June 2019 from https://engonetrca2.blob.core.windows.net/assets/uploads/files/2017%20Rare%20Solutions%20Report_%20FINAL%20DIGITAL%20VERSION.pdf
  2. Patient support. (n.d). Rare Cancers Australia. Retrieved on 7 June 2019 from https://www.rarecancers.org.au/page/1100/rare-cancers

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