Treatment for rare and less common cancers

Treatment options

Depending on the RLC cancer type or how advanced it is, treatment may include surgery, radiation therapy, chemotherapy, immunotherapy and targeted therapy. 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. An example of this is chemoradiation – when radiation therapy and chemotherapy are given together. Your specialist will work with the multidisciplinary team to recommend the best treatment options for you.

To learn more about treatments and side effects, see our information on surgery, chemotherapy and radiation therapy, as well as immunotherapy, targeted therapy and some specific types of cancer.

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). Call 1800 257 600 or visit Rare Cancers Australia, or call Cancer Connect on 13 11 20. 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 example, some people may be able to get help paying for travel and accommodation through a government service or insurance. For more information, ask your treatment centre, doctor or call Cancer Connect on 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
• Listen to Cancer Council's “Sex and Cancer” podcast.

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 Australian Cancer Trials.

When the cancer is advanced

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.

Listen to The Thing About Advanced Cancer podcast series.

As my cancer was so rare, there were no specific protocols to treat it.

Wayne