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Making treatment decisions

Sometimes it is difficult to decide on the type of treatment to have. You may feel that everything is happening too fast, or you might be anxious to get started. 

Check with your specialist how soon treatment should begin, as it may not affect the success of the treatment to wait a short time. Ask them to explain the options, and take what time you can before making a decision. 

Know your options – Understanding the disease, the available treatments, possible side effects and any extra costs can help you weigh up the options and make a well-informed decision. Check if the specialist is part of a multidisciplinary team and if the treatment centre is the most appropriate one for you – you may be able to have treatment closer to home, or it might be worth travelling to a centre that specialises in a particular treatment. 

Record the details – When your doctor first says you have cancer, you may not remember everything you are told. Taking notes can help. If you would like to record the discussion, ask your doctor first. It is a good idea to have a family member or friend go with you to appointments to join in the discussion, write notes or simply listen. 

Ask questions – If you are confused or want to check anything, it is important to ask your specialist questions. Try to prepare a list before appointments. If you have a lot of questions, you could talk to a cancer care coordinator or nurse.

Consider a second opinion – You may want to get a second opinion from another specialist to confirm or clarify your specialist’s recommendations or reassure you that you have explored all of your options. Specialists are used to people doing this. Your GP or specialist can refer you to another specialist and send your initial results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. You might decide you would prefer to be treated by the second specialist.

It’s your decision – Adults have the right to accept or refuse any treatment that they are offered. For example, some people with advanced cancer choose treatment that has significant side effects even if it gives only a small benefit for a short period of time. Others decide to focus their treatment on quality of life. You may want to discuss your decision with the treatment team, GP, family and friends.

Should I join a clinical trial?

Your doctor or nurse may suggest you take part in a clinical trial. Doctors run clinical trials to test new or modified treatments and ways of diagnosing disease 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 mesothelioma.

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.

Treatment

Treatment for people with mesothelioma may be aimed at improving symptoms or trying to control the disease. Various treatments may be offered alone or in combination, including immunotherapy, chemotherapy, radiation therapy and surgery. 

The main types of mesothelioma are treated in different ways:

The treatment options suggested by your health care team will vary depending on:

  • the location, stage and type of mesothelioma, which helps doctors predict how the cancer will respond to treatment
  • your age, health and fitness and home support available 
  • what is most important to you.

Deciding to have treatment

The cancer treatments discussed below help control the disease for a longer period of time and improve quality of life for some people. It is important to talk to your treatment team about what each treatment involves, what side effects to expect and how long recovery will take. 

Some treatments are not suitable for everyone. Even if a particular treatment is recommended, it is up to you whether or not you want to have it. You can also call Cancer Council 13 11 20 or talk to one of the mesothelioma support services listed on the Living with mesothelioma page

Immunotherapy

This is a type of drug treatment that uses the body’s own immune system to fight cancer. Immunotherapy drugs called checkpoint inhibitors block proteins that stop immune cells from recognising and destroying cancer cells, so the immune cells can potentially recognise and attack the cancer. Immunotherapy doesn’t always work for everyone.

Immunotherapy is now the usual first option for people well enough to have any treatment. It’s also used for people who had chemotherapy as their first treatment. However, it may not be used up-front if you are having trimodality therapy . Your medical oncologist will discuss whether immunotherapy is the most suitable option for you. 

The immunotherapy drugs most commonly used are ipilimumab and nivolumab in combination. These are covered by the PBS for most people, and sometimes on workplace insurance (e.g. icare in NSW).

Having immunotherapy – Immunotherapy drugs are usually given through a vein (intravenously) in hospital and can take between 30 and 90 minutes. You will wait a short time to be monitored for any reaction before going home. Immunotherapy may be used alone or in combination with chemotherapy.

Side effects of immunotherapy – Immunotherapy can cause inflammation throughout the body, which may lead to different side effects depending on which part of the body is inflamed. 

The combination of immunotherapy drugs may increase the risk of side effects, which include fatigue, rash, painful joints and diarrhoea. Most people have mild side effects that are easily treated and usually improve. More serious side effects may include heart and thyroid problems, but your doctor should discuss any concerns with you.

It’s important to let someone on your medical team know if you have any new or worsening symptoms, rather than just put up with them – even if they happen weeks or months after you had immunotherapy treatment. If untreated, some side effects can become serious or even life-threatening. For a detailed list of side effects, visit eviq.org.au. 

Chemotherapy

Chemotherapy uses drugs to kill or slow the growth of cancer cells while causing the least possible damage to healthy cells. The goal of chemotherapy is usually to shrink the cancer, reduce symptoms and improve quality of life. For some people with mesothelioma, chemotherapy doesn’t work.

The main chemotherapy drugs used for pleural mesothelioma are pemetrexed in combination with carboplatin or cisplatin. The targeted therapy drug bevacizumab may be added to this combination. Research shows that using some drugs together can give improved results compared with using just a single drug. Vinorelbine (and less commonly gemcitabine) may be used if mesothelioma returns.

Having chemotherapy – Chemotherapy is usually given through a drip  into a vein (intravenously). The drugs travel through the bloodstream and reach the entire body. This is known as systemic chemotherapy. 

You will usually have chemotherapy during day visits to your hospital or treatment centre. Each session may last for several hours and be followed by a rest period of several weeks. Together, the session and rest period are called a cycle. You will probably have up to 6 cycles. However, the length and timing of the treatments and rest days of each  cycle may vary from person to person.

Chemotherapy weakens the immune system by lowering the level of white blood cells, making it harder for your body to fight infections. If you have a temperature over 38oC, contact your doctor immediately or go to your nearest hospital emergency department.

Side effects of chemotherapy – Most chemotherapy drugs cause side effects, which depend on the type and dose of the drug. You may have vitamin B12 injections and low-dose folic acid, which have been shown to reduce the side effects of pemetrexed and cisplatin.

Common side effects of chemotherapy include:

  • tiredness and feeling weak (fatigue)
  • nausea and/or vomiting
  • bowel problems (anti-nausea drugs can also cause these)
  • sore or dry mouth, or small ulcers in the mouth
  • taste changes and/or loss of appetite
  • increased risk of anaemia (low level of red blood cells)
  • reduced kidney function
  • skin rash
  • numb or tingling hands or feet (peripheral neuropathy)
  • ringing in the ears (tinnitus) or hearing loss
  • red and itchy eyes (conjunctivitis).

You will have medicines (such as anti-nausea drugs) to help control any side effects. If side effects become too difficult to manage, your oncologist can adjust the dose or type of chemotherapy drug used.

While hair loss and scalp problems are rare with chemotherapy for mesothelioma, some hair thinning may occur. Some people have trouble thinking clearly or experience short-term memory loss after chemotherapy, but this usually improves once treatment ends.

If you have the targeted therapy drug bevacizumab, side effects differ to chemotherapy, and may include hypertension, bleeding and blood clots.

Radiation therapy

Radiation therapy (also sometimes called radiotherapy) is the use of targeted radiation to kill or damage cancer cells so that they cannot grow, multiply or spread. Many other types of cancer may respond well to radiation therapy. It can be more difficult to target radiation therapy for mesothelioma because the cancer is often spread over a large area. However, radiation therapy may still be used at different stages of treatment for pleural mesothelioma and in different ways:

  • as palliative treatment to relieve pain or other symptoms caused by tumours and improve quality of life
  • after chemotherapy and surgery (adjuvant radiation therapy) to help kill any remaining cancer cells.

Having radiation therapy – Treatment is carefully planned to destroy as many cancer cells as possible while causing the least harm to your normal tissue. The initial appointment to map out the treatment (simulation) may take a few hours. You will have CT scans of the affected area, and your skin may be marked with a special ink. This makes sure that the radiation is directed at the same place on your body every time you have radiation therapy. The ink may be permanent, but is only the size of a freckle. Tell someone if you are worried about this.

Radiation therapy is usually every day, Monday to Friday, as an outpatient (you don’t stay in hospital). A session usually lasts about 20 minutes – the radiation therapists have to set up the equipment and position you, but the treatment itself takes only a few minutes.

Radiation therapy doesn’t hurt and you aren’t radioactive afterwards.

The length of the treatment course will vary depending on the purpose of radiation therapy. It might involve 1–10 sessions for up to 2 weeks for palliative treatment, or longer if radiation therapy is combined with other treatments with the aim of long-term control.

Side effects of radiation therapy – Radiation therapy may cause various side effects during treatment or shortly afterwards, but most side effects go away after the treatment stops.

Depending on the area of the body being treated, side effects can include: fatigue; peeling, cracked skin that looks red or sunburnt and may be uncomfortable; painful swallowing; or loss of hair in the treatment area.

Radiation therapy to the chest area can cause difficulty swallowing and symptoms of reflux for a few days or weeks, sometimes leading to weight loss. If high doses of radiation therapy are given to the chest area, it may cause permanent changes (fibrosis) in the lung tissue.

After I was diagnosed, I had chemotherapy for 10 months. Then I had my right lung removed. This surgery was followed by 30 treatments of radiation therapy.”

Serafina

Trimodality therapy

Having a combination of chemotherapy, radical surgery and radical radiation therapy to treat mesothelioma is known as trimodality therapy. The aim of having the 3 types of treatment is to remove as much pleural mesothelioma as possible, and stop any remaining mesothelioma cells from growing or spreading. The most effective combination will depend on how you respond to treatment. 

Trimodality therapy is an intensive treatment that is available only in a few centres and it is not commonly recommended. Despite reduced lung capacity afterwards, some people continue to live independently. 

Trimodality therapy may be suitable for people:

  • with a small amount of pleural mesothelioma at an early stage (T1–T3)
  • with an epithelioid type of pleural mesothelioma
  • whose scans show a good response to chemotherapy before surgery and no signs of pleural mesothelioma progression
  • with no signs of spread into the lymph nodes or any other disease on CT and/or FDG–PET scans
  • who are able to live independently with one lung
  • who are physically fit enough for surgery.

Your surgeon is the best person to work out if trimodality therapy may be suitable for you. Ask your surgeon or oncologist to explain the likely outcome for you. 

The surgery is a major operation, and not everyone wants to go ahead after the risks and benefits are explained. Sometimes, even if someone seems suitable for intensive treatment, the doctor may adjust treatment if the mesothelioma doesn’t respond well to chemotherapy, is growing quickly or has spread, or if the person becomes too tired or unwell.

The 3 parts of trimodality therapy

1. Chemotherapy

  • Several cycles of chemotherapy are given to shrink the tumour.
  • A scan then checks the size of the tumour. If it has shrunk, you’ll have surgery in 4–6 weeks. If there is little or no response, you will not have radical surgery. 

Chemotherapy is usually given before surgery, but some people have chemotherapy after surgery.

2. Radical surgery

  • This is either an extrapleural pneumonectomy (EPP) or pleurectomy decortication (PD). An EPP removes the whole lung, while a PD keeps the lung but removes the outer lining of the pleura (parietal pleura) and any visible tumours. Sometimes a smaller operation removes only part of the parietal pleura. Lymph nodes in the centre of the chest that drain the lung are also removed.
  • You’ll stay in hospital for 10–14 days, or longer if complications occur. After 6–8 weeks you’ll be able to start radiation therapy.

3. Radical radiation therapy

  • Radiation therapy aims to kill any remaining mesothelioma and is delivered using intensity modulated radiation therapy (IMRT). This type of radiation therapy can be accurately shaped around the chest cavity, so higher doses can be delivered directly to the tumour cells while minimising the damage to other organs in the chest and abdomen.
  • IMRT is often given after surgery, but may be given before surgery. How long you need radiation therapy will depend on your circumstances.
  • Radiation therapy may cause side effects , but most improve after treatment.

More information

Talk to your GP and specialists about your options or call Cancer Council 13 11 20 for more information.

Key points about treating mesothelioma

Overview
The type of treatment you have will depend on the location, stage and type of mesothelioma, as well as your age, health and fitness. It may include immunotherapy, chemotherapy, radiation therapy and surgery. 

Pleural mesothelioma

  • Immunotherapy drugs used may include ipilimumab and nivolumab. 
  • Chemotherapy drugs used include pemetrexed in combination with cisplatin or carboplatin. The targeted therapy drug bevacizumab may be added to this combination.
  • Radiation therapy may be used at different stages of pleural mesothelioma and in different ways. It may be used to relieve pain, or given after chemotherapy and surgery to kill any remaining cancer cells.
  • Some people with pleural mesothelioma may be offered trimodality therapy, which is a combination of chemotherapy, major surgery and radiation therapy. Surgery may include an extrapleural pneumonectomy (EPP) or a pleurectomy decortication (PD).

Peritoneal mesothelioma

  • Some people with peritoneal mesothelioma have surgery to remove as much cancer as possible. This is known as a peritonectomy.
  • Chemotherapy for peritoneal mesothelioma 
    may be systemic (given into the bloodstream) or intraperitoneal (given directly into the abdomen). Intraperitoneal chemotherapy can be given in several ways, but often involves the chemotherapy being heated (HIPEC).
  • Immunotherapy may be given for some people with peritoneal mesothelioma. Drugs used may include ipilimumab and nivolumab.

Sources and references

Understanding Mesothelioma - A guide for people with cancer, their families and friends

Acknowledgments

This edition has been developed by Cancer Council NSW on behalf of all other state and territory Cancer Councils as part of a National Cancer Information Subcommittee initiative.

All updated content has been clinically reviewed by A/Prof Anthony Linton, Medical Oncologist, Concord Cancer Centre and Concord Repatriation General Hospital, NSW; Dr Naveed Alam, Thoracic Surgeon, St Vincent’s Private Hospital Melbourne and Monash Medical Centre, VIC; Prof David Morris, Peritonectomy Surgeon, St George Hospital and UNSW, NSW.

This edition is based on the previous edition, which was reviewed by the following panel: A/Prof Anthony Linton (see above); Dr Naveed Alam, (see above); Donatella Arnoldo, Consumer; Polly Baldwin, 13 11 20 Consultant, Cancer Council SA; Dr Melvin (Wee Loong) Chin, Medical Oncologist, Sir Charles Gairdner Hospital and National Centre for Asbestos Related Diseases, WA; Prof Kwun Fong, Thoracic and Sleep Physician and Director, UQ Thoracic Research Centre, The Prince Charles Hospital, and Professor of Medicine, The University of Queensland, QLD; Vicki Hamilton OAM, Consumer and CEO, Asbestos Council of Victoria/ GARDS Inc., VIC; Dr Susan Harden, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Penny Jacomos, Social Worker, Asbestos Diseases Society of South Australia, SA; Prof Brian Le, Director, Parkville Integrated Palliative Care Service, The Royal Melbourne Hospital and Peter MacCallum Cancer Centre, VIC; Lung Cancer Support Nurses, Lung Foundation Australia; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW; Prof David Morris (see above); Joanne Oates, Registered Occupational Therapist, Expert Witness in Dust Diseases, and Director, Evaluate, NSW; Chris Sheppard and Adam Barlow, RMB Lawyers.

We also thank the health professionals, consumers and editorial teams who worked on previous editions of this title. Previous editions of this title and related resources were funded in part by the Heads of Asbestos Coordination Authorities and a donation from Lyall Watts.

Cancer Council 13 11 20

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Guide to best cancer care

This mesothelioma guide explains the standard of high-quality cancer care that all Australians can expect, from diagnosis, to treatment, recovery, and living with cancer.