Your pathway through lung cancer care

Because every person is different, every lung cancer pathway will be different.

This infographic and website show you what to expect if you have been diagnosed with lung cancer. Every person’s individual lung cancer diagnosis and treatment pathway will differ, but these resources show the main aspects that you may encounter with your lung cancer care.

You can find more information in Lung Foundation Australia’s booklet, Better living with lung cancer – a patient guide.

Usually, the first step people take is to see their GP with signs or symptoms such as coughing, breathlessness or chest pain. Symptoms of lung cancer can be vague. GPs usually undertake initial tests such as a chest X-ray or CT scan to confirm what could be causing the symptoms. If these tests find something that might be lung cancer, the GP will refer you to a local specialist to do further tests to confirm your diagnosis and treatment options. Other people might present directly to a hospital emergency department when signs and symptoms are more severe, such as coughing up blood.

Ideally, you should be referred to a cancer centre or hospital that has a dedicated lung cancer multidisciplinary team (which is made up of health professionals who specialise in lung cancer), or that has access to these services. Services may be in different centres or hospitals, and you may need to travel to different centres for tests or treatment. This is usually more common for people who live outside a major city.

Specialist appointment

You will be referred to a respiratory specialist within a hospital or cancer centre, who ideally is part of a lung cancer multidisciplinary team. Your specialist will organise for you to have further tests to confirm your lung cancer diagnosis. An accurate diagnosis can take up to two weeks.

At your initial appointment, your specialist will discuss your medical history and ask many questions. You may have answered some of these questions before, but it is important to make sure the specialist has all the information they need. They will explain what tests you need to have, how and when they will be done, and how long this process may take.

Your specialist will discuss the next steps and the role of the multidisciplinary team in your treatment planning and ongoing care.

This process may take a few weeks to get your test results. It’s important to wait until you have all of your test results before planning treatment to ensure you receive the best treatment and care for you and your type of lung cancer.

When your doctor first tells you that you have cancer, it can be very stressful and you may not remember many details about what you are told. If your doctor uses medical terms that you don’t understand, it’s okay to ask for a simpler explanation. Before seeing your doctor, it may help to write down your questions. Many people like to have a family member or friend with them to take part in the discussion with their doctor, to take notes or simply to listen.

For some people, it is important to speak to more than one doctor about their diagnosis and recommended treatment plan. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. Speak to your doctor if you would like a second opinion. They are used to such requests and can refer you to another specialist, as well as send your initial results to that person.

If you smoke, talk to your doctor about quitting. Treatment for lung cancer is more effective in people who don’t smoke. See smoking cessation.

If you smoke, talk to your doctor about quitting. Treatment for lung cancer is more effective in people who don’t smoke.

See smoking cessation.

Diagnosis and staging

If lung cancer is confirmed, your specialist may organise further tests to identify the type of lung cancer and its stage (that is, the size of the tumour and whether it has spread). These tests may include imaging (such as CT or PET scans, or ultrasound), and molecular or genetic testing of the tumour. It can take up to two weeks to diagnose and stage your specific lung cancer, which will help identify your treatment options.

All these tests are important to gather all the information your multidisciplinary team needs to make the right treatment recommendations for you.

Lung cancer is often diagnosed by a tissue sample or biopsy (a procedure to remove some of the affected tissue). This is can be done by bronchoscopy, a fine needle aspirate or a surgical procedure.

If requested by your doctor, your tissue biopsy can be tested in more detail. These detailed tests have different names (molecular testing, genetic testing, gene mutation testing), but are basically the same – they look for DNA changes or specific proteins in the cancer. These tests can help the treatment team determine if targeted treatment approaches could be effective for you.

At this time, your specialist or nurse may provide information about any supportive care services you might need, including financial and social help.

Lung cancer type and location diagram
Lung cancer type and location diagram

Multidisciplinary team care

You will be cared for by a range of healthcare professionals who are part of a multidisciplinary team (MDT, also called multidisciplinary care). Each of these health professionals specialises in a different aspect of your lung cancer care. Members of a lung cancer MDT meet to discuss and assess the diagnosis and staging results to make recommendations about the best treatment and care options available to you. Your specialist will discuss your treatment options with you.

An MDT may include respiratory physicians, surgeons, radiation and medical oncologists, palliative care specialists, nurses, social workers and allied health professionals from other disciplines (such as physiotherapists). These health professionals may be situated within one hospital or in several different hospitals or locations.

At an MDT meeting, health professionals discuss newly diagnosed lung cancer patients, as well as patients who require discussion about their follow-up treatment. Together, the MDT assesses the aims, benefits and risks for each patient to make recommendations about that patient’s treatment options and care. They also consider your wellbeing, how fit you are and your wishes. Your specialist will discuss the recommendations from this meeting with you to develop your treatment plan.

Not all lung cancer patient cases are presented at a lung cancer MDT meeting. This usually depends on the complexity of your diagnosis and whether the treating hospital has an established MDT or access to an MDT meeting.

Treatment and monitoring

Depending on your lung cancer type and stage, your treatment options will vary. A range of options may be suitable to treat your cancer and/or manage your symptoms, and treatments can be given alone, one after another, or together in combination. Your specialist will monitor you closely during treatment to ensure the treatments are working for you, manage any side effects, and take action if the cancer progresses or spreads to other parts of your body.

Your treatment options will be based on your cancer’s particular type, stage, location and molecular characteristics. When planning your treatment options, your specialist will also consider your general health, breathing capacity and your personal wishes. Your specialist will explain the aims, expected outcomes and side effects of each treatment option in a clear and open way.

Treatment options may include surgery, chemotherapy, radiotherapy or targeted therapies, immunotherapy, supportive and palliative care, or a clinical trial. These can be given as single treatments or in combination – for example, you may have surgery and radiotherapy.

Your treatment options will be based on your cancer’s particular type, stage, location and molecular characteristics. When planning your treatment options, your specialist will also consider your general health, breathing capacity and your personal wishes. Your specialist will explain the aims, expected outcomes and side effects of each treatment option in a clear and open way.

Treatment options may include surgery, chemotherapy, radiotherapy or targeted therapies, immunotherapy, supportive and palliative care, or a clinical trial. These can be given as single treatments or in combination – for example, you may have surgery and radiotherapy.

Different treatments have different side effects. Your specialist or nurse will discuss these with you and how to deal with expected side effects. Always speak with your specialist or nurse about any side effects you experience so they can support you to manage the symptoms. In most cases, and especially if treated early, many side effects can be minimised with non-medicine strategies. Medicines may also be prescribed to manage the side effects.

People living with lung cancer face many emotional, psychological and practical day-to-day demands on top of the physical impacts of the disease and its treatment. Eating well, exercising and relaxing may help reduce stress and improve wellbeing. Addressing changes in your emotions and relationships early on is also important, and you should speak with your specialist, nurse or GP.

Lung Foundation Australia has developed a brief quality of life checklist to help you or your carer identify whether you might benefit from some extra help in managing your lung cancer. In addition, Lung Foundation has developed a set of ten short self-management videos that aim to increase the knowledge and confidence of people living with lung cancer to enable them to better manage their condition, its symptoms and their overall wellbeing.

Being diagnosed with lung cancer is a life-changing experience. It is important to consider and discuss an advance care plan with your specialist, so that your thoughts and wishes about your end-of-life care are known and respected.

Your treatment and the monitoring of you and your lung cancer can be ongoing over a long time. Lung cancer patients can remain on treatment or under the care of their specialist for many years and live well with a lung cancer diagnosis. Some patients undergo maintenance therapy that aims to maintain the benefits of their treatment. In some cases, you may be referred back to your local hospital for your ongoing care.

Surgery to remove the tumour.

More information about surgery.

Targeted therapies to treat the cancer using medicines that target specific molecular pathways.

More information about targeted therapies.

Chemotherapy to treat the cancer using medicines.

More information about chemotherapy.

Supportive and palliative care to help manage your symptoms, support your psychosocial and emotional wellbeing, improve your quality of life and transition to end-of-life care if required.

More information about supportive and palliative care.

Radiotherapy to treat the cancer using radiation.

More information about radiotherapy.

Immunotherapy to treat the cancer using a drug that targets the body’s own immune system.

Clinical trials to research new ways to treat lung cancer and improve patients’ health.

More information about clinical trials.

More about treatment

Different treatments have different side effects. Your specialist or nurse will discuss these with you and how to deal with expected side effects. Always speak with your specialist or nurse about any side effects you experience so they can support you to manage the symptoms. In most cases, and especially if treated early, many side effects can be minimised with non-medicine strategies. Medicines may also be prescribed to manage the side effects.

People living with lung cancer face many emotional, psychological and practical day-to-day demands on top of the physical impacts of the disease and its treatment. Eating well, exercising and relaxing may help reduce stress and improve wellbeing. Addressing changes in your emotions and relationships early on is also important, and you should speak with your specialist, nurse or GP.

Lung Foundation Australia has developed a brief quality of life checklist to help you or your carer identify whether you might benefit from some extra help in managing your lung cancer. In addition, Lung Foundation has developed a set of ten short self-management videos that aim to increase the knowledge and confidence of people living with lung cancer to enable them to better manage their condition, its symptoms and their overall wellbeing.

Being diagnosed with lung cancer is a life-changing experience. It is important to consider and discuss an advance care plan with your specialist, so that your thoughts and wishes about your end-of-life care are known and respected.

Your treatment and the monitoring of you and your lung cancer can be ongoing over a long time. Lung cancer patients can remain on treatment or under the care of their specialist for many years and live well with a lung cancer diagnosis. Some patients undergo maintenance therapy that aims to maintain the benefits of their treatment. In some cases, you may be referred back to your local hospital for your ongoing care.

Follow-up

Once your treatment is over, it is important that you receive regular follow-up care. Your specialist will prepare a plan that outlines the tests you need to have and when you need to have them, and a plan for managing any late effects of treatment. This follow-up care may be provided by your specialist, local hospital or GP.

Your specialist will discuss your follow-up care plans with you, and also give you information about healthy living and what you can do to prevent the cancer from coming back. Your specialist will also outline your follow-up care plans to your GP and local hospital services, where appropriate.

Read more about life after treatment.

Survivorship

The good news is the survival rate for people with lung cancer has increased over recent years. Many people continue to live healthy lives after their curative treatment. Life after cancer treatment can present its own challenges, and you may need some time to adjust.

You may have mixed emotions when your treatment finishes. You will have been busy with appointments and focused on treatment, but afterwards you may feel anxious rather than secure. You might worry about every ache and pain, and wonder if the cancer is coming back.

If you have concerns or are feeling overwhelmed, it is important that you talk with your doctor.

Disease recurrence

Your routine follow-up tests, other tests or new symptoms might indicate that the cancer has come back. If this happens, you will be referred back to your original specialist, if possible, who will determine whether the cancer has come back or whether it is a new cancer. Your specialist will discuss a new treatment plan depending on the type of cancer, whether it has spread, your previous treatment and your wishes.

It is really important that you attend your follow-up appointments with your specialist. Your specialist will monitor you to ensure that, if the cancer does return, action is taken quickly. It is also important that you act on any symptoms that are new or have changed, and speak to your specialist or GP about them.

If your lung cancer does return, your specialist will discuss the aims, benefits and risks of each type of treatment with you, and explain the treatment that they recommend you to have. If appropriate, they will also discuss advance care planning.

Resources

Read this information as plain text.

Download this information as a pdf brochure.

You can find more information in Lung Foundation Australia’s booklet, Better living with lung cancer – a patient guide. The web page for Better living with lung cancer includes a list of contents so that you can go straight to the topics of most interest to you.

Watch short self-management videos that aim to increase the knowledge and confidence of people living with lung cancer to enable them to better manage their condition, its symptoms and their overall wellbeing.

Explore the resources, news and support available on the Lung Foundation Australia website.