Head and neck cancerYour guide to best cancer care

It can be overwhelming after being told that you have or may have head and neck cancer. A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience.

Information and support

If you need additional information or would like support, you can visit the head and neck cancer page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Symptoms

Your general practitioner (GP) or dentist should do a checkup to see if they can find what is causing your symptoms. They will ask you about any problems or issues you might be having – for example, a mouth ulcer that hasn’t healed, a lump in your neck or finding it hard to swallow, or changes to your voice.

Initial tests you may have

Referrals

If your GP or dentist has concerns, you will be referred to a specialist at a public hospital or in private practice for more tests. Specialists are doctors who are highly trained in a particular area of health care.

Specialists may include a head and neck surgeon or a maxillofacial surgeon (a surgeon who treats the head, neck, mouth, jaw and face).

You can bring a family member or friend with you to your appointments.

Timeframes

Your specialist appointment should happen within two weeks of referral. If you can’t get an appointment within this time, follow up with your GP or dentist.

The specialist will do more tests to see if you have head and neck cancer. This process of working out if you have a medical problem is called making a diagnosis. You might have one test or a mix of tests:

An ultrasound, CT scan and MRI scan will be done if you haven’t already had one.

These tests will give the specialist more information about the cancer, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.

Timeframes

Results should be available within two weeks from when you have the tests.

There are several ways to treat head and neck cancer. Your specialist will talk to you about your treatment options.

You will be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.

You might have one treatment or a mix of treatments:

Surgery is where the cancer is cut out. It is the most common treatment for people with head and neck cancer.

Radiation therapy uses x-rays to kill cancer cells and stop the cancer growing. Radiation therapy might be used alone, or with chemotherapy.

Chemotherapy uses drugs to kill cancer cells and stop the cancer growing. It may be used with radiation therapy to increase how well the treatment works, or alone to slow the cancer growing and reduce symptoms.

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a cancer experience) are also available.

Timeframes

After agreeing to your treatment plan, treatment should start within four weeks if trying to cure the cancer or within two weeks if a cure is unlikely.

You can ask your GP for a referral to another specialist for a second opinion.

Recovery

Cancer treatment can cause a range of physical and emotional changes.

Follow-up care plan

Your healthcare team will work with you to make a plan for you and your GP. This plan will explain:

• who your main contact person is after treatment
• how often you should have check-ups and what tests this will include
• understanding and dealing with side effects of treatment
• how to get help quickly if you think the cancer has returned or is worse

Many people worry that the cancer will return. Your specialist and healthcare team will talk with you about your needs and can refer you to other healthcare professionals and community support services.

Other information you may get:

• signs and symptoms to look out for if the cancer returns
• late effects of treatment and the specialists you may need to see
• how to make healthy lifestyle choices to give you the best chance of recovery and staying well

For more information, visit After Cancer Treatment.

Sometimes cancer can come back after treatment. It can come back in the same place or can appear somewhere different in your body.

If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.

Treatment will depend on how far the cancer has spread, how fast-growing it might be, and the symptoms you are experiencing.

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

Decisions about cost

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.