Mesothelioma A guide for people with cancer, their families and friends Cancer information Introduction Mesothelioma Cancer Council Victoria 2011. Mesothelioma: for people with cancer, their families and This booklet is about mesothelioma. This is a rare type of cancer that friends. Melbourne: Cancer Council Victoria. develops in the lining of the lung (it is not the same as lung cancer) or First published September 2011. Minor alterations and reprint April 2012. abdomen (stomach area). This booklet is available online: visit www.cancervic.org.au Acknowledgments If you are looking for information about lung cancer, read the Cancer Cancer Council Victoria thanks everyone who contributed to the development of this Council’s booklet Lung Cancer: For people with cancer, their families and booklet. We especially thank the people who agreed to be interviewed and offer valuable insights into how mesothelioma affects individuals and their partners, friends and families. friends available at www.cancervic.org.au or from 13 11 20. Thank you to the writer Annie Angle. Many people feel understandably shocked and upset when they are told Our reviewers included: they have mesothelioma. This booklet aims to help you, your family, friends Dr Malcolm Feigen, Senior Radiation Oncologist at the Radiation Oncology Centre, Austin Health; Dr Paul Jenkinson, General Practitioner; Mary Duffy, Lung Nurse Specialist, and carers understand how mesothelioma is diagnosed and treated. We Peter MacCallum Cancer Centre; Professor Bill Musk, Respiratory Physician and Chief also include information about support services you may use. By knowing Investigator on an NHMRC grant for a cohort study on Wittenoom workers and residents; Kathryn Turner, Social Worker, Slater & Gordon Lawyers ; Jane McDermott, Principal, about these things you and those close to you will be better able to comfort Maurice Blackburn Lawyers; Asbestos Diseases Society of Victoria reviewers: Julie and support each other during a difficult time. Bastian, Rod Smith (Ex President of ADSVIC), Farid Moghaddas, Lisa Moghaddas and Anita Steiner; Vicki Hamilton, CEO/Secretary, Gippsland Asbestos Related Disease Support Inc (GARDS); Lawrie O’Shea, President of the Asbestos Information and Support We cannot tell you what is the best treatment for your situation. You need Service (AISS) to discuss this with your doctors. However, we hope we will answer some Illustration on page 8 by Con Stamatis. of your questions and help you think about the questions you want to ask This booklet was developed with funding generously donated by an anonymous donor. your doctors. This booklet is dedicated to Julie Bastian (wife of Rod Smith) and Farid Moghaddas (husband of Lisa Moghaddas). Sadly they both passed away from mesothelioma before You may like to pass this booklet on to your family and friends for their publication, but will always be remembered for their valuable insights and contributions to the production of this booklet. information. Interpreting service: Deaf or hearing or speech impaired This booklet does not need to be read from cover to cover, but can be read If you use text-based communication, call the Cancer Council Helpline (13 11 20) through the National Relay Service (NRS) 13 3677. If you can hear and still use your voice, but have in sections according to your needs or interest. The words in bold are a speech impairment, call the Cancer Council Helpline through NRS 1300 555 727. explained in the glossary at the back of this booklet. Generous Victorians who fundraise to fight cancer make many Cancer Council services, including the publication of this booklet, possible. For information on how you can help, visit www.cancervic.org.au or call 1300 65 65 85. Are you reading this for someone who does not understand English? Tell them about the Multilingual Cancer Information Line. See the back cover for details. AL1074 Mesothelioma For people with mesothelioma, their families and friends Contents What is cancer? 5 Getting a second opinion 37 Taking part in a clinical trial 37 About mesothelioma 7 Follow-up care 39 Causes of mesothelioma 9 Research into mesothelioma 39 How common is mesothelioma? 11 Symptoms 11 Living with mesothelioma 43 Insurance, superannuation and loans 44 Diagnosis 14 Returning to work after treatment 45 Can we screen for mesothelioma? 14 Unfair treatment at work 45 Doctors and other health professionals you may see 15 What if I can no longer work? 46 How mesothelioma is diagnosed 16 Support for carers 47 Waiting for test results 20 Support with childcare and home duties 47 Claiming compensation 48 Treatment 21 Your feelings 59 ‘Staging’ the disease 21 Your relationships 61 Surgery for pleural mesothelioma 24 Sexuality 63 Surgery for peritoneal mesothelioma 27 Exercise 65 Chemotherapy 28 Relaxing 66 Radiotherapy 29 When cancer can’t be cured 31 Advanced cancer 67 Controlling the fluid build-up (pleurodesis) 32 What is advanced cancer? 67 Complementary and alternative medicines 32 What if my cancer is advanced? 68 Prognosis 34 Treatment 69 Palliative care 69 Making decisions about treatment 35 When treatment seems too much 71 Talking with doctors 36 Coping with symptoms and side effects 73 Talking with others 36 Coping with everyday life 86 Mesothelioma For people with mesothelioma, their families and friends What to expect as the disease progresses 87 The importance of hope 88 What is cancer? Caring for someone with mesothelioma 90 Cancer is a disease of the body’s cells. Our bodies are always making new Questions you may like to ask your doctor 92 cells: so we can grow, to replace worn-out cells, or to heal damaged cells after an injury. This process is controlled by certain genes. All cancers Services and information 94 are caused by changes to these genes. Changes usually happen during our lifetime, although a small number of people inherit such a change Glossary: what does that word mean? 101 from a parent. Index 104 Normally, cells grow and multiply in an orderly way. However, changed genes can cause them to behave abnormally. They may grow into a lump. These lumps can bebenign (not cancerous) or malignant (cancerous). Benign lumps do not spread to other parts of the body. A malignant lump (more commonly called a malignant tumour) is made up of cancer cells. When it first develops, this malignant tumour may be confined to its original site. If these cells are not treated theyMalignant MalignantMalignantMalignantmay spread throughNormalNormalNormalNormal blood and otherAbnormalAbnormalAbnormalAbnormal types of vessels AbnormalintoAbnormalAbnormalAbnormal surrounding tissueorororor invasive invasive invasiveinvasive and to othercells cellspartscellscells of the body.cellscellscellscells cellscellscellscells multiply multiply multiplymultiply cancercancercancercancer The beginnings of cancer Normal cells Abnormal cells Cancer in situ Angiogenesis BoundaryBoundaryBoundaryBoundary LymphLymphLymphLymph vesselvesselvesselvessel Boundary Lymph BloodBloodBloodBlood vessel vesselvesselvesselvessel Blood vessel Normal cells Abnormal cells Abnormal cells Malignant or multiply invasive cancer Mesothelioma For people with mesothelioma, their families and friends PrimaryPrimaryPrimaryPrimary cancer cancer cancercancer LocalLocalLocalLocal invasion invasion invasioninvasion AngiogenesisAngiogenesisAngiogenesisAngiogenesis TumoursTumoursTumoursTumours grow grow growgrow their their theirtheir own own ownown bloodbloodbloodblood vessels vessels vesselsvessels LymphLymphLymphLymph vessel vessel vesselvessel boundaryboundaryboundaryboundary MetastasisMetastasisMetastasisMetastasis CellsCellsCellsCells move move movemove away away awayaway from from fromfrom primaryprimaryprimaryprimary tumour tumour tumourtumour and and andand invadeinvadeinvadeinvade other other otherother parts parts partsparts of of ofof thethethethe body body bodybody via via viavia blood blood bloodblood vesselsvesselsvesselsvessels and and andand lymph lymph lymphlymph vesselsvesselsvesselsvessels BloodBloodBloodBlood vessel vessel vesselvessel Malignant Normal Abnormal Abnormal or invasive cells cells cells multiply cancer Boundary Lymph vessel Blood vessel How cancer spreads About mesothelioma Primary cancer Primary cancer Mesothelioma is a type of cancer affecting the mesothelial cells. These Local invasion Local invasioncells cover most organs inside the body. They form a coating known as the mesothelium. Angiogenesis Angiogenesis Tumours grow their TumoursThe mesotheliumgrow their own makes a lubricating fluid that helps protect the organs own blood vessels bloodas well vessels as allowing them to move around. For example, this fluid makes it easier for the lungs to move inside the chest when you breathe. • LymphThe vesselmesothelium is called the pleura in the chest area. Mesothelioma in Lymph vessel boundary the chest is called pleural mesothelioma. This is the most common type of mesothelioma. Metastasis Cells move away from the • The mesothelium is called the peritoneum in the abdomen. This Metastasis primary tumour and invade mesothelioma is called peritoneal mesothelioma. This is a less common other parts of the body via Cells move away from blood vessels and lymph primarytype of tumour mesothelioma. and vessels invade other parts of the body via blood Blood vessel Occasionally,vessels and lymph mesothelioma starts in the membrane around the heart or vesselsthe reproductive organs. It forms growths shaped like small pieces of cauliflower. They grow and spread gradually to surrounding areas. A When