Living with mesothelioma

Thursday 1 June, 2017

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 On this page: Finding support | Looking after yourself | Relationships with others | Sexuality, intimacy and fertility | Ongoing management | What happens when mesothelioma becomes active again? | The role of hope


Life with a mesothelioma diagnosis can present many challenges. Take some time to adjust to the physical and emotional changes, and establish a daily routine that suits you and the symptoms you're coping with.

You are likely to feel a range of emotions about having mesothelioma. Emotions and Cancer offers strategies for coping with anxiety, fear, anger and other feelings. You may also have practical concerns, such as how to make a compensation claim for asbestos exposure and what to do about work.

Dealing with feelings of sadness

If you have continued feelings of sadness, have trouble getting up in the morning, or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have been diagnosed with mesothelioma.

Talk to your GP, as counselling or medication – even for a short time – may help. Some people are able to get a Medicare rebate for sessions with a psychologist. Ask your doctor if you are eligible. Your local Cancer Council may also run a counselling program.

The organisation beyondblue has information about coping with depression and anxiety. To order a fact sheet, call 1300 22 4636 or go to beyondblue.org.au. You can also connect with a counsellor over the phone, online or by email.

Finding support

The organisations listed here can offer support or connect you with other people who have mesothelioma. You can also call Cancer Council 13 11 20 for information about many aspects of living with cancer.

Looking after yourself

A mesothelioma diagnosis will cause physical and emotional strain. It's important to try to look after your wellbeing as much as possible.

Nutrition

Healthy food can help you cope with treatment and side effects. A dietitian can help you manage special dietary needs or eating problems, and choose the best foods for your situation.

See Nutrition and Cancer or call Cancer Council 13 11 20.

Staying active

Physical activity often helps to reduce tiredness, improve circulation and elevate mood. The amount and type of exercise you do depends on what you are used to, how you feel, and your doctor's advice.

See Exercise for People Living with Cancer for more information about the benefits of exercise, and outlines simple exercises that you may want to try.

Complementary therapies

These therapies are used with conventional medical treatments. You may have therapies such as massage, relaxation and acupuncture to increase your sense of control, decrease stress and anxiety, and improve your mood. Alternative therapies are used instead of conventional medical treatments. These therapies, such as coffee enemas and magnet therapy, can be harmful.

Let your doctor know about any therapies you are using or thinking about trying, as some may not be safe or evidence-based. For more information, see Understanding Complementary Therapies or call Cancer Council 13 11 20.

Relationships with others

Having cancer can affect your relationships with family and friends. This may be because cancer is stressful and tiring, or as a result of changes to your values, priorities or outlook on life.

Give yourself time to adjust to what's happening, and do the same for others. People may deal with the cancer in different ways – for example, they may be overly positive, play down fears, or keep their distance. It may be helpful to discuss your feelings with each other.

See Sexuality, Intimacy and Cancer and Fertility and Cancer or call Cancer Council 13 11 20.

Sexuality, intimacy and fertility

Cancer can affect your sexuality in physical and emotional ways. The impact of these changes depends on many factors, such as treatment and side effects, your self-confidence, and if you have a partner. Although sexual intercourse may not always be possible, closeness and sharing can still be part of your relationship.

If you are able to have sex, you may be advised to use contraception to protect your partner or avoid pregnancy for a certain period of time. Your doctor will talk to you about the precautions to take. They will also tell you if treatment will affect your fertility permanently or temporarily. If having children is important to you, talk to your doctor before starting treatment.

Ongoing management

As symptom management and treatment for mesothelioma are likely to be ongoing, you will have regular check-ups to monitor your health. Everyone is different, so your doctor will decide how often you need check-ups, but it's usually every 6–8 weeks.

During check-up appointments, your doctor will do a physical examination and may also arrange a CT scan to see how active the mesothelioma is. What other tests you have, and who you see and where, will depend on your health and the type of treatment you've had. If you live a long way from the hospital or treatment centre, you may be able to arrange for some of the tests to be done by your GP or the specialist who referred you for major treatment.

If you notice any change in your symptoms between appointments or you experience side effects from treatment, you should contact your doctor as soon as possible. You don't have to wait until the next scheduled appointment.

What happens when mesothelioma becomes active again?

For nearly every person with mesothelioma, the disease will become active again even if it has responded well to treatment. This is known as disease progression or recurrence.

When mesothelioma becomes active again, you and your doctor will need to consider what treatment is needed to try to regain control of the disease and provide relief from symptoms.

Treatment options will depend on the symptoms you are experiencing and ay include:

  • radiotherapy to reduce the size of the regrowth and pain
  • further chemotherapy or second line chemotherapy
  • further surgery
  • participating in a clinical trial to access new drugs being
  • developed and tested.

Palliative treatment for mesothelioma can be offered alone or in combination with surgery, chemotherapy and radiotherapy. You may find it helpful to read Understanding Palliative Care and Living with Advanced Cancer.

At some point, you may decide to stop active treatment and focus on managing symptoms and maximising quality of life. Facing End of Life discusses the physical, emotional, spiritual and practical aspects of living with end-stage cancer.

The role of hope

A diagnosis of advanced cancer does not mean giving up hope. People with mesothelioma often have many good months or years ahead of them and can continue to enjoy many aspects of life, including spending time with their families and other people who are important to them.

As the disease progresses, the things that are hoped for tend to change. For example, a person may now focus on living comfortably for as long as possible or being able to celebrate a particular event. You can have these hopes while still acknowledging the reality of the situation.

"As hard as it was for us, my wife decided it was time to `rest' and not struggle with needles, tests and hospital appointments. She said she would now prefer to spend time with those she loved, watch her garden grow and watch her grandchildren play." – Bill

Reviewed: Dr Steven Kao, Medical Oncologist, Chris O'Brien Lifehouse, NSW; Theodora Ahilas, Principal, Maurice Blackburn Lawyers, NSW; Prof David Ball, Director, Lung Service, Peter MacCallum Cancer Centre, VIC; Cely Benchoam, Consumer; Prof Kwun Fong, Thoracic Physician, University of Queensland Thoracic Research Centre, The Prince Charles Hospital, QLD; Victoria Keena, Executive Officer, Asbestos Diseases Research Institute, NSW; Angela Kyttaridis, Social Worker, Concord Repatriation General Hospital, NSW; Dr Judith Lacey, Head of Supportive Care and Integrative Medicine, Chris O'Brien Lifehouse, NSW; Amanda Maple, 13 11 20 Consultant, Cancer Council SA; A/Prof Brian McCaughan, Thoracic Surgeon, Sydney Cardiothoracic Surgeons, Strathfield Private Hospital and University of Sydney, NSW; Jocelyn McLean, Mesothelioma Support Coordinator, Asbestos Diseases Research Institute, NSW; Kirsten Mooney, Thoracic Cancer Nurse Coordinator, WA Cancer and Palliative Care Network, Department of Health, WA; Prof David Morris, University of New South Wales, Department of Surgery, St George Public Hospital, NSW; Rod Smith, Awareness and Support Co-ordinator, Bernie Banton Foundation. We also thank the health professionals, consumers and editorial teams who have worked on previous Cancer Council resources.

Updated: 01 Jun, 2017