Pleural mesotheliomaYour guide to best cancer care

It can be overwhelming after being told that you have or may have pleural mesothelioma. 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 friends through this experience.

Information and support

If you need additional information or would like support, you can visit the mesothelioma information 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) will assess your symptoms. The main symptoms are shortness of breath, pain when breathing, chest/shoulder/upper arm pain, loss of appetite, weight loss, and persistent cough or bouts of pneumonia. Your GP will conduct a physical examination and order tests.

Because mesothelioma usually results from exposure to asbestos a number of years previously, it is important to mention any asbestos exposure that may have occurred in the past to alert your doctor to this risk factor.

Initial tests you may have

Your GP should also discuss your needs (including physical, psychological, social and information needs) and recommend sources of reliable information and support.

Referrals

If mesothelioma is suspected, you will be referred to a respiratory specialist for further testing. Your GP will provide the specialist with information about your medical history and results of the initial tests.

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

The respiratory specialist will do more tests to see if you have mesothelioma. 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:

It can be helpful to contact cancer peer support groups and support groups for carers.

To ensure you receive the best care, your specialist will arrange for a team of health professionals to plan your treatment based on your preferences and needs.

The team will be made up of professionals who have experience managing and supporting a person with mesothelioma. Your specialist will tell you when the team will be discussing your case.

Your team will plan your ongoing care and should discuss the different treatment options with you including the likely outcomes, possible side effects and the risks and benefits. You might want to ask for more time before deciding on your treatment or ask for a second opinion.

You might have one treatment or a mix of treatments:

Chemotherapy may be given to try to shrink the cancer or try and slow its growth. This may be given in combination with radiotherapy or after surgery.

Radiation therapy (also called radiotherapy) can be used as a palliative treatment to ease symptoms of mesothelioma such as shortness of breath, pain or growths which can occasionally appear on the chest wall. It can also be used to prevent cancer re-growing in the chest following surgery.

The aim of surgery is to confirm the diagnosis and to treat the fluid in the chest to try and prevent it from coming back. This involves sticking the lung to the inside of the chest wall (a pleurodesis). It is important that this surgery is performed by a surgeon who is very experienced in performing lung surgery and performs several operations every year.

Watching and monitoring. Often patients have no symptoms either at diagnosis or after the initial surgery. In this case, no further treatment is given, and your specialist may advise watchful waiting and dealing with symptoms as they arise.

Indwelling chest catheter. Very occasionally, the fluid build-up cannot be controlled by surgery and a small tube called a chest catheter is inserted into the pleural space to allow fluid to drain out of the chest into a bottle. The tube can stay in place for some time. A nurse should provide you with information about surgery and adjusting to life with a chest catheter.

Palliative treatment can be used at different stages to relieve various symptoms and help to improve your quality of life.

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

Your doctor should discuss your needs with you during and after treatment (including physical, psychological, social and information needs) and may refer you to another service or health professional for different aspects of your care. Supportive care (treatment or services that support you through a cancer experience) are also available.

For more information on clinical trials, visit the Australian Cancer Trials page.

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

The majority of patients will be discharged into the community and generally need to see a respiratory specialist for regular follow-up appointments.

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

If you need extra help after treatment, your GP or specialist can discuss your needs with you and refer you to appropriate health professionals and/or community organisations.

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.