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.
1. Initial investigation and referral
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
Blood tests
To check your overall health, how your blood cells, liver and kidneys are working.
Chest x-ray
To help identify any abnormalities or fluid buildup in the pleura (the lining of the lungs and chest wall).
Computed tomography (CT) scan
Computer technology is used to create detailed images of the lungs and the pleura.
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.
Questions you might want to ask
- Can I choose whether I go to a public hospital or private practice?
- Can I choose the specialist I see?
- How much will appointments cost me?
2. Diagnosis and staging
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:
Pleural aspiration
A sample of fluid from the chest is taken by a needle and sent to a pathologist for testing. This is often performed with the use of ultrasound imaging.
Positron emission tomography (PET) scan
This produces a three-dimensional colour image that may show where cancers are located. A small amount of radioactive material is injected and the whole body is scanned.
VATS or CT guided biopsy
A small tissue sample (a biopsy) is taken from the lungs to examine under a microscope. The sample can be taken by keyhole surgery, called VATS, or using a needle guided by a CT scan.
Pleuroscopy
Your specialist may look inside your chest using a special telescope and take fluid and samples through a small hole made in your chest while you are under sedation.
It can be helpful to contact cancer peer support groups and support groups for carers.
Questions you might want to ask
- What is pleural mesothelioma?
- What tests will I have?
- How much will tests/appointments cost?
- Where should I be treated, and do I have a choice?
- What stage is my cancer?
- What support services are available to me?
3. Treatment
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.
Clinical trials
You may be offered to take part in a clinical trial. Clinical trials are used to test whether new treatments are safe and work better than current treatments. Many people with cancer are now living longer, with a better quality of life, because of clinical trials.
Complementary therapies
Speak to your healthcare team about any complementary therapies (including dietary supplements like vitamins) you use or would like to use. Something as common as vitamins might not work well with your treatment.
For more information on clinical trials, visit the Australian Cancer Trials page.
Questions you might want to ask
- What treatment do you recommend?
- Where will I have to go to have treatment?
- What will treatment cost and how much of the cost will I have to pay myself?
- What activities/exercise will help me during and after treatment?
- Can I still work?
- How will the treatment affect my day-to-day life?
- Who are the people in my team and who is my main contact person?
- What side effects could I have from treatment?
- Who do I contact if I am feeling unwell or have any questions?
- Will treatment affect my ability to have a child?
4. After treatment
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.
Questions you might want to ask
- Who should I contact if I am feeling unwell?
- What can I do to be as healthy as possible?
- Where can I get more help?
5. If cancer returns
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.
Questions you might want to ask
- Where is the cancer and has it spread?
- What are my treatment options?
- What are the chances that the treatment will work this time?
- Is there a clinical trial available?
- Where else can I get support?
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.
6. Questions of cost
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.
7. Further support
Mesothelioma support
You can speak to specially trained staff at Cancer Council on 13 11 20. They can answer your questions about the effects of cancer, explain what will happen during treatment and link you to support groups and other community resources.
If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50.
For support and advice for carers, call the Carers Association on 1800 242 636.
More support options
Australian Cancer Survivorship Centre
Has general and tumour-specific information, primarily focused on the post-treatment survivorship phase
• Telephone: (03) 9656 5207
• Website: www.petermac.org/cancersurvivorship
National Health Services Directory
A directory providing information on local hospital and community services
• Website: www.nhsd.com.au
Asbestos Diseases Research Institute
Provides information on Mesothelioma and referral to support groups and programmes.
• Telephone: 1300 237 400
• Website www.adri.org.au
beyondblue: the national depression initiative
Information on depression, anxiety and related disorders, available treatment and support services
• Telephone: 1300 22 4636
• Website: www.beyondblue.org.au
Cancer Australia
Information on cancer prevention, screening, diagnosis, treatment and supportive care for Australians affected by cancer, and their families and carers
• Telephone: 1800 624 973
• Website: www.canceraustralia.gov.au
The Bernie Banton Foundation
Information on mesothelioma, available treatment and support services.
• Telephone: 1800 031 731
• Website: www.berniebanton.com.au
Care Search: Palliative Care Knowledge network
Information for patients and carers on living with illness, practical advice on how to care, and finding services
• Telephone: (08) 7221 8233
• Website: www.caresearch.com.au
Optimal care pathways have been developed for health professionals and health services. However, patients and carers may find useful information in this version to help understand the processes their treating health professionals are following.