Coping with any cancer diagnosis is challenging, but if you have been diagnosed with a rare or less common cancer, you may experience added distress. You might feel angry if it has taken longer to get a diagnosis. You may not know anyone else with this type of cancer and you might be finding it difficult to get support.
Two issues people with a rare or less common cancer often face are increased uncertainty and isolation. Often there is less information available about your cancer and it can be harder for doctors to answer your questions or tell you what may happen.
You may feel emotionally and even physically isolated, perhaps needing to travel to a hospital far away from home for treatment, or you may have to give up work and change your usual routine.
It is natural to feel overwhelmed by your cancer diagnosis. Your cancer team can refer you to a health professional trained to help people manage how they are feeling. They may also be able to put you in touch with other people who are going through similar treatment.
Rare Cancers Australia
Rare Cancers Australia aims to improve the lives and health outcomes of Australians living with rare and less common cancers. It focuses on patient support programs, treatment and research, fundraising, and creating a community for people diagnosed with a rare or less common cancer.
Rare Cancers Australia also produces Radio Rare, a podcast sharing the stories of those in and around the rare and less common cancer community.
After treatment ends, you will have regular check-ups to monitor your health, manage any long-term side effects and check that the cancer hasn’t come back or spread. How often you will need to see your doctor will depend on the level of monitoring needed for the type and stage of the cancer you had. Check-ups will become less frequent if you have no further problems.
You will usually have a physical examination, tests and scans. You may wish to develop a ‘survivorship care plan’ which sets out a schedule for follow-up care, lists any symptoms and long-term side effects to watch out for, identifies any medical or emotional problems that may develop and suggests ways to adopt a healthy lifestyle.
For some people, cancer does come back after treatment. This is known as a recurrence. Having a rare cancer, however, does not make you any more likely to have a recurrence than having a more common cancer. It is important to have regular check-ups so that if cancer does come back, it can be found early.
Asking your doctor questions will help you make an informed choice about your treatment and care. You may want to include some of the questions below in your own list:
- What type of cancer do I have?
- Where is the cancer located in my body?
- Has the cancer spread? If so, where to? How fast is it growing?
- Can you explain the results of the tests to me?
- I’m thinking of getting a second opinion. Can you recommend another specialist?
- Is there a patient organisation or support group for the type of cancer I have?
- How many patients with this type of cancer have you treated before?
- Will the treatment for my rare or less common cancer be different from the more common type of that cancer?
- What are my treatment options?
- How long will the treatment take? When will treatment start?
- What is the aim of the treatment?
- How will I know if the treatment is working?
- Are there any out-of-pocket expenses not covered by Medicare or my private health cover? Can the cost be reduced if I can’t afford it?
- What is my prognosis?
- Are there any complementary therapies that might help me?
- Are there any clinical trials being done for this cancer that I could join?
- What are the risks and possible side effects of each treatment?
- How will these be managed?
- Will I have a lot of pain? If so, what will be done about this?
- How often will I need check-ups after treatment?
- If the cancer returns, how will I know? What further treatment could I have?
There are many different types of rare and less common cancers including Kaposi Sarcoma, endocrine cancer, thymus cancer, peritoneal cancer, and eye cancer such as retinoblastoma.
A range of organisations provide information and support specifically for people affected by a rare or less common cancer. You may find the following helpful:
As these organisations are based overseas, some treatments and services may be different to those available in Australia.
Specific rare and less common cancers
Find out more about the risk factors, symptoms, diagnosis and treatment of specific rare and less common cancers including:
See the full A-Z list of cancer types
Understanding Rare and Less Common Cancers
Download our Understanding Rare and Less Common Cancers booklet to learn moreDownload now
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.