Depending on the type of cancer you have and how advanced it is, your treatment options may include conventional methods such as surgery, radiation therapy and chemotherapy, or newer treatments such as immunotherapy and targeted therapies. You may also be offered treatments through clinical trials.
Some people will have only one cancer treatment, but many people need a combination, such as surgery with chemotherapy. Sometimes treatments can be given at the same time.
With more common cancers, treatments are based on established guidelines for the best care for that specific type of cancer. For RLC cancers, however, guidelines have not been developed as numbers of these cancers are low. Even where the rare cancer is a subtype of a more common cancer, the approach may need to be quite different.
In general, your treatment options will depend on:
- the type of cancer you have
- the stage and grade of the cancer
- other tests that might be needed to give more information about your cancer, for example genetic tests
- your overall health
- any other medical problems you might have
- your personal preferences.
Getting specialist care
If you have a rare cancer, you may find that not all the services you need will be offered by your local centre and you may have to travel to another hospital.
Rare Cancers Australia have a directory of health professionals and a list of Australian hospitals, treatment centres and hospices with cancer care services. You can also call 13 11 20 if you are struggling financially with travel and treatment costs or need other support.
Looking after yourself
Cancer and cancer treatment can cause physical and emotional strain, so it’s important to look after yourself.
Improvements in treatment
Many significant advances in cancer treatment have occurred over the last 30 to 40 years, but often treatments for rarer cancers don’t develop as quickly. There are several reasons for this:
- Due to lower incidence rates, research into rare cancers attracts less funding than research into more common cancers.
- Researchers have less access to tissue samples of rare cancers, restricting their ability to discover how the cancers develop and respond to treatment.
- Clinical trials of new treatments for rare and less common cancers are more difficult to conduct due to the low number of patients. Clinical trials usually rely on large groups of people who have a similar condition.
- The systems for approving a medication or a new way to treat a particular cancer can take years or decades and are often not flexible enough to enable approval of new treatments for a small group of patients.
Despite these challenges, targeted future therapies for rare and less common cancers are being developed. Research into genome sequencing and genetic testing offer a chance of earlier intervention, individualised therapies and holds potential to improve the quality of life for people with rare and less common cancers.
Living with advanced cancer
Some cancer may be advanced when it is first diagnosed, have spread from its original site or come back after treatment. If this happens, there are still treatment options to remove the cancer or help control its growth. Advanced cancer usually can’t be cured, but it can often be controlled. This is known as palliative treatment.
Treatment will depend on where the cancer started, how far and where it has spread, and your general health, treatment goals and preferences. Treatment can help maintain quality of life for several years. In this case, the cancer may be considered a chronic (long-term) disease.
Palliative care helps people with advanced cancer to live as fully and comfortably as possible. The main goal is to help you maintain your quality of life by identifying and dealing with your physical, emotional, cultural, social or spiritual needs.
Palliative care may be beneficial for people at any stage of advanced cancer – it is not just for the end of your life. Your palliative care may be led by your GP or community nurse, or by the specialist palliative care team in your area, who will help you work out the best place for your care. This may be at home, in a hospital, at a residential aged care facility or in a palliative care unit.
Understanding Rare and Less Common Cancers
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Expert content reviewers:
Dr Dani Bullen, Clinical Psychologist, Peter MacCallum Cancer Centre, VIC; Sally Carveth, Cancer Support Consultant, Cancer Council NSW; Tracey Gardner, Senior Psychologist, Cancer Council Queensland, QLD; Dr Anna Hughes, Liaison Psychiatrist and Senior Staff Specialist, Canberra Health Services, ACT Health, ACT; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Wayne Reynolds, Consumer; Dr Charlotte Tottman, Clinical Psychologist, Allied Consultant Psychologists and Flinders University, SA; Ann Marie Weber, Consumer; Shirley Witko, Senior Social Worker, Sir Charles Gairdner Hospital, WA.
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The information on this webpage was adapted from Understanding Rare and Less Common Cancers - A guide for people with cancer, their families and friends (2021 edition). This webpage was last updated in September 2021.