iL iv ng with Adav nced aC ncer A guide for people with cancer, their families and friends Practical and support information For information & support, call Living with Advanced Cancer A guide for people with cancer, their families and friends First published January 2003. This edition December 2016. © Cancer Council Australia 2016. ISBN 978 1 925136 31 9 Living with Advanced Cancer is reviewed approximately every three years. Check the publication date above to ensure this copy is up to date. Editor: Jenny Mothoneos. Designer: Eleonora Pelosi. Printer: SOS Print + Media Group. Acknowledgements This edition has been developed by Cancer Council NSW on behalf of all other state and territory Cancer Councils as part of a National Publications Working Group initiative. We thank the reviewers of this booklet: Dr Maria Ftanou, Lead Clinical Psychologist, Peter MacCallum Cancer Centre and Research Fellow, Melbourne School of Population and Global Health, University of Melbourne, VIC; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Alison Hocking, President-Elect, Oncology Social Work Australia, VIC; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Prof Liz Lobb, Professor of Palliative Care (Allied Health), Calvary Health Care, Kogarah, NSW; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Hamish Park, Consumer. This booklet is funded through the generosity of the people of Australia. Note to reader Always consult your doctor about matters that affect your health. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for medical, legal or financial advice. You should obtain independent advice relevant to your specific situation from appropriate professionals, and you may wish to discuss issues raised in this book with them. All care is taken to ensure that the information in this booklet is accurate at the time of publication. Please note that information on cancer, including the diagnosis, treatment and prevention of cancer, is constantly being updated and revised by medical professionals and the research community. Cancer Council Australia and its members exclude all liability for any injury, loss or damage incurred by use of or reliance on the information provided in this booklet. Cancer Council Cancer Council is Australia’s peak non-government cancer control organisation. Through the eight state and territory Cancer Councils, we provide a broad range of programs and services to help improve the quality of life of people living with cancer, their families and friends. Cancer Councils also invest heavily in research and prevention. To make a donation and help us beat cancer, visit cancer.org.au or call your local Cancer Council. Cancer Council Australia Level 14, 477 Pitt Street, Sydney NSW 2000 Telephone 02 8063 4100 Facsimile 02 8063 4101 Email Introduction This booklet is for people who have advanced cancer. This means the cancer has spread from the original (primary) site or has come back (recurred). Health professionals use several terms to describe cancer that has moved beyond early stages, including secondary, metastatic, advanced and progressive cancer. Sometimes health professionals don’t use a particular name. In this booklet, we use the term ‘advanced cancer’. Regardless of the words used, it’s confronting to hear that the cancer has spread or come back. This booklet offers general information about advanced cancer: what it is, how it is treated, what might happen and what support is available. There is also information for the family and friends of people who have advanced cancer. You may find reading about advanced cancer distressing – read what seems useful now and leave the rest until you’re ready. How this booklet was developed This information booklet was developed with help from medical and health professionals and people who have been diagnosed with advanced cancer. If you or your family have any questions, call Cancer Council 13 11 20. We can send you more information and connect you with support services in your area. Turn to the last page of this book for more details. Contents What is advanced cancer? .............................................. 4 Key questions ................................................................... 6 What happens now? ............................................................................6 What treatments are available? ............................................................6 Who will coordinate my treatment? ......................................................7 How will advanced cancer affect my day-to-day life? .........................7 Will palliative care help? .......................................................................8 How long have I got? ...........................................................................9 How do I find hope? ...........................................................................10 The emotional impact .................................................... 12 First reactions .....................................................................................12 Coping with advanced cancer............................................................14 The effect on people close to you ......................................................18 Talking with family and friends ...................................... 20 Partners ..............................................................................................20 Parents ...............................................................................................23 Friends ................................................................................................23 Children ..............................................................................................24 How to talk to your children, family and friends .................................26 When you don’t want to talk .............................................................28 Making treatment decisions .......................................... 29 When treatment seems too much ......................................................30 Talking with doctors ...........................................................................31 A second opinion ...............................................................................31 Taking part in a clinical trial ................................................................32 Treatment for advanced cancer .................................... 33 Chemotherapy ....................................................................................35 Surgery ...............................................................................................35 Radiotherapy ......................................................................................36 Hormone therapy ...............................................................................36 Targeted therapy.................................................................................37 Immunotherapy ..................................................................................37 Palliative care .....................................................................................38 Rehabilitation ......................................................................................40 Complementary and alternative therapies .........................................40 Managing symptoms ...................................................... 44 Pain ....................................................................................................44 Feeling sick .........................................................................................47 Loss of appetite ..................................................................................50 Shortness of breath ............................................................................51 Fatigue ................................................................................................52 Planning ahead ............................................................... 54 Advance care planning .......................................................................55 Preparing legal documents ................................................................57 Dealing with bills and debts ...............................................................59 Planning your funeral ..........................................................................60 Information for carers ................................................... 63 Emotional concerns ............................................................................64 Practical concerns ..............................................................................68 Physical concerns ..............................................................................70 Support and information ................................................ 71 Useful websites .............................................................. 75 Question checklist .......................................................... 76 Glossary .......................................................................... 77 What is advanced cancer? Cancer is a disease of the cells, which are the body’s basic building blocks. It occurs when abnormal cells divide and multiply in an uncontrolled way. There are many types of cancer and each type develops differently. Some grow slowly, some advance rapidly, and others behave unpredictably. Some types of cancer respond well to treatment, while other types are more difficult to treat. Advanced cancer is a term used to describe cancer that is unlikely to be cured. It may be primary or secondary cancer. Primary cancer refers to the first mass of cancer cells (tumour) in an organ or tissue. The tumour is confined to its original site, such as the bowel. This is called cancer in situ, carcinoma in situ or localised cancer. How cancer starts Normal cells Abnormal Angiogenesis cells Boundary Lymph vessel Blood vessel Normal cells Abnormal cells Abnormal cells Malignant or multiply invasive cancer 4 Cancer Council If cancer cells from the primary site move through the body’s bloodstream or lymph vessels to a new site, they can multiply and form other malignant tumours (metastases). This is known as secondary or metastatic cancer. Secondary cancer keeps the name of the original, primary cancer. For example, bowel cancer that has spread to the liver is still called metastatic bowel cancer, even when the person has symptoms caused by cancer in the liver. Although medical treatments may not be able to cure advanced cancer, some treatments may still be able to slow its growth or spread, sometimes for months or even years. Palliative care can also help manage cancer symptoms, which may include pain, and can reduce side effects from cancer treatments. At any stage of advanced cancer, a range of other palliative care services can enhance quality of life. How cancer spreads Primary cancer Local invasion Angiogenesis – tumours grow their own blood vessels Lymph vessel Metastasis – cells invade other parts of the body via blood vessels and lymph vessels What is advanced cancer? 5 Key questions Q: What happens now? A: Some people’s cancer may be advanced when they are first diagnosed. For others, the cancer may spread or come back (recur) after initial treatment.  Advanced cancer usually can’t be cured, but it can often be controlled. For some people, improved treatments can help manage the cancer and relieve side effects, allowing people to live for a long time – sometimes for years – with a good quality of life. In this case, the cancer may be considered a chronic (long-lasting) disease.  Q: What treatments are available? A: This will depend on the aim of treatment – whether it’s to try to cure the cancer, keep the cancer from spreading, or to control symptoms. Treatment will depend on where the cancer started, how far it has spread, your general health and preferences. The most common treatments include chemotherapy, radiotherapy, surgery, targeted therapy, hormone therapy, immunotherapy, or a combination of these. Sometimes, treatment is available through clinical trials. Treatments can be used for different reasons, so talk to your doctor about the aim of each treatment. As the cancer progresses, the aim may change from trying to cure the cancer, to controlling the cancer, to relieving symptoms and improving quality of life. For further details, see the Treatment for advanced cancer chapter on pages 33–43. 6 Cancer Council Q: Who will coordinate my treatment? A: If you have many health professionals caring for you (also referred to as a multidisciplinary team), it can help to know who is coordinating your care. This may be your general practitioner (GP), your palliative care team, the oncologist, a care coordinator, or another member of the treatment team. See page 34 for more information. Q: How will advanced cancer affect my day-to-day life? A: Cancer affects people’s lives in different ways. You may be able to continue your usual routines for some time. If you work, you may need to take time off or stop work altogether. Treatment or other services can be expensive and may affect your finances. This can add to concerns you may have, such as negotiating leave from work or getting financial assistance. The cancer or treatment may cause various symptoms, such as nausea, fatigue or breathlessness. These may impact on what you can comfortably do and on your sense of independence. See the Managing symptoms chapter on pages 44–53. There is still a life to be lived and pleasures to be found and disappointments to be had. Living with advanced cancer is a different life, not just a journey towards death. Julie Key questions 7 There can be practical issues you may have to think about to make life more comfortable, such as medical equipment, alterations to your home, or home help. If the hospital is a long distance from your home, you may require transport or accommodation, especially if there are times when you are in and out of hospital. You may also experience emotional changes from the cancer and its treatment – for example, some hormonal treatments affect people’s emotions. Changes to your work, finances and health may also result in mood changes. Q: Will palliative care help? A: Palliative care is an approach that allows people with advanced cancer to maintain their quality of life in a way that is meaningful to them. It treats physical, practical, emotional or spiritual symptoms. Palliative care involves a range of services offered by medical, nursing and allied health professionals, as well as volunteers and carers. While some people delay or feel anxious about accessing palliative care because they believe it’s only offered to people close to death, this type of care can improve quality of life from the time of diagnosis. It can be used for only a few weeks or months, but the number of people receiving palliative care for several years is increasing. Palliative care can also provide support for families and carers. For more information, see pages 38–39. 8 Cancer Council