Dealing with breast cancer requires decision making. Many of these decisions have to do with your health, cancer treatment and lifestyle. Some of these decisions can be challenging and you may need to seek further information and support to help reach a decision.
This Navigator topic includes information to help you when making decisions in relation to living with a breast cancer diagnosis, during and after treatment. It also includes information on genetic breast cancers, which may affect the decisions you make about treatment and communicating with your family.
The information contained in the other Navigator topics is also available to assist you when making decisions in relation to particular areas of your treatment, health and lifestyle.
Making decisions during and after breast cancer treatment
Through the course of your breast cancer experience you will be provided with much information and required to make many decisions.
When confronted with decisions about your health it is common to feel overwhelmed, worried or anxious about making the right decision. Sometimes there are no easy answers.
At times your choices may be limited by your circumstances – for example, during times of crisis or when your health needs require immediate action.
At other times you may have more options to consider, which can be challenging when deciding what to do.
You can however feel more in control of the decision making process when you have:
Information to help you make decisions
In this navigator topic, there is information in the resources listed on:
There is also information contained under each of the other navigator topics that will help in your decision making about particular aspects of treatment or life after treatment:
Decision making is complex. The resources listed are only some that are available to you.
Other resources will be added to this and other navigator topics as resources become available, or are recommended through your feedback.
The following questions may assist when communicating with your treating health professionals to gain the information you need when faced with difficult decisions.
Also refer to the other navigator topics for examples of questions that can help in decision making.
Listed below are a number of key organisations, both in Australia and overseas, that provide information and support relevant to decision making around living with a breast cancer diagnosis. The links below will take you to the home page of the organisation where you can search for your own information.
Counterpart (formerly BreaCan) is a unique free information and support service for Victorian women living with breast or gynaecological cancers. Women can connect and speak with trained peer support volunteers who have experienced cancer themselves or cared for someone who has. We also have a resource library for Victorian women.
The Victorian arm of the Cancer Council provides up to date information on all cancer conditions. There is a Cancer Helpline available by phone for general information on cancer treatment. Questions can also be communicated by email.
An Australia-wide organisation that provides information, support and advocacy on breast cancer issues, from diagnosis through to life after treatment.
The Consumer Health Forum is the peak body organisation involved representing the interests of Australian healthcare consumers.
Familial or genetic testing for people with, or at risk of, an inherited cancer are provided by some major hospitals. Refer to the page from the Cancer Council on 'Family Cancer Centres' for service locations and contact information.
Breast care nurses are specially trained registered nurses who act as patient advocates, and coordinate care for women experiencing breast cancer. They provide specialist breast cancer support and resources which can assist you in making decisions around breast cancer. Click on 'Get Support' to find a Nurse in your area.
Pink Hope provides support and information to Australians at an increased risk of, or diagnosed with, genetic breast and ovarian cancers.
The online resources recommended below include links to important information relevant to this area that is primarily available online or can be printed off as a contained document. The link will take you to the section that is relevant to this navigator topic.
Some of the links to organisations' websites may be repeated in the ‘Key organisations’ section of this navigator in recognition of the important role these organisations play in support for people living with cancer.
An interactive web portal that guides you through the specific steps and recommended care for each stage of breast cancer treatment. This is particularly useful as background information before discussions with your treatment team. Click the link to download as a printable fact sheet.
Information for Aboriginal and Torres Strait Islander people who have cancer. This document describes the care that should be provided at each step of the cancer pathway in Australia. It is the patient’s version of the Optimal Care Pathways for health professionals. Includes links for support and information. Also available as a PDF fact sheet.
In this 6th episode of the 'The thing about cancer' podcast, Julie McCrossin and Professor Lyndal Trevena discuss the process of making treatment decisions.
Episode 1 of this podcast explains the role of the cancer nurses working on the Cancer Council telephone service, who can provide a reliable source of information if questions arise.
The section on 'Making decisions about your health' on the Jean Hailes website includes information on choosing a doctor, evaluating the validity of online information, and questions to consider when making a health-related decision. The website also contains a large range of information and resources on women's health and well-being.
Formerly the My Journey Kit, this tool is now online. Sign up to access information that can be tailored to your own situation. Find information on decision making in the 'Health system and your choices' section, as well as the 'Treatment' section.
In episode 5 of this podcast an Aboriginal Support Worker and two practice nurses discuss the extra supports available for people from Aboriginal and Torres Strait Islander communities undergoing cancer treatment.
Two online tools are available on the Ottawa Hospital Research Institute website to aid in decision making around tough health issues. The aids include a personal decision making guide to complete individually, and a family decision making guide to complete with a family member. The tool helps to identify your knowledge, values, support and level of certainty when faced with decisions. The tool can be completed online and printed off.
This page of the Cancer Council Victoria website has information on managing 'unhelpful' thinking that can lead to worry, anxiety and despondency. Scroll down to 'Treatment decisions'.
An explanation of what you can reasonably expect from the health care system and your treating team. Scroll to the bottom of the page to download or request a copy of the booklet 'Cancer care and your rights' 2019.
Australian government website includes a section on understanding 'Your risk and breast cancer'. The section includes a 'risk calculator' for women who have not had breast or ovarian cancers.
This article, published on the UK medical information website 'Patient.co.uk', provides information on weighing up absolute and relative risk when making decisions about undergoing medical treatment.
The CHF is an Australian peak body organisation representing the interests of health care consumers. The CHF website has a range of fact sheets (under 'publications'), including a consumer guide to clinical trials, how to safely use medications, and how to understand the Medical Benefits Scheme (MBS).
This Australian government website has details on what clinical trials involve, what to consider when deciding whether to go on a trial, and search function to find specific drug trials.
The section 'How to decide whether a clinical trial is right for you?' contains key questions to consider and ask of health practitioners. While this is an American organisation, the types of questions are relevant to an Australian setting. The website also contains information on using complementary therapies.
This webpage on the BCNA website includes information on the link between cancer and family history, what to do reduce your risk of developing cancer, and available resources. BCNA also offer an online forum on this topic.
Not for profit American organisation for women with a BRCA mutation or family history of cancer. The website provides links to news boards and information on research relevant to decision making in this area. A webinar is available on 'How do I decide?' which includes discussion on weighing up treatment options.
Explanation of what a clinical trial is, and how and why people might choose to take part. Links to current clinical trials.
This print-friendly fact sheet provides tips on finding reliable online health information following your breast cancer diagnosis. Includes a list of some websites that provide good quality information.
Available as a web page or to download as a PDF booklet, this resource explains genetic breast cancer risks in simple language. Includes monitoring information for women who have been found to be at risk, and the role of genetic counselling and testing.
This fact sheet explains when family history may be important in breast cancer risk and the options available if you have concerns about a strong family history. It can be downloaded as a PDF or ordered in hard copy.
Dr Yoland Antill, Medical Oncologist and Cancer Genetics specialist explains how genetics can influence cancer and determine treatment options.
This page explains what happens when you see a genetics specialist, including a detailed explanation of the collection of family history. As this resource is UK-focused, treatment and support services are not available to Australians.
This page explains the risks of genetic breast cancers as well as the steps you can take to reduce your risk. Scroll to 'More information' for links to webinars and family cancer centres.
The resources below are online or hard copy books that you can source from the BreaCan library, your local bookstore, library or online. Some of the selected books have dedicated sections on decision making, as well as a range of other information that can help you in decision making around living with a cancer diagnosis.
This book by an Australian cancer specialist provides a comprehensive overview of breast cancer diagnosis, treatment and adjustment to life after treatment. The book covers many common decisions faced by women diagnosed with breast cancer and provides important information to consider when making decisions. Available at Counterpart Resource Centre. Not for loan.
Boycare Publishing, Australia (2010)
This is the 4th edition of this popular book that provides explanations of a woman's choices about surgery following a breast cancer diagnosis. Includes treatment, breast preservation and reconstruction. Please note that this book has a US focus, but is still very relevant for women in Australia. Includes illustrations and photographs.
Quality Medical Publishing, Missouri USA (4th edition, 2011)
Written from an evidence based perspective by authors with a medical background, this book includes a section on ‘working together’ with your medical practitioner to help gather information you need and make decisions. It includes a discussion about coping emotionally with the cancer experience, and explores the use of complementary therapies.
Harper Collins, New York (2nd edition, 2000)
British authors Professor Trish Greenhalgh and Dr Liz O'Riordan both have medical backgrounds, and were both diagnosed with breast cancer in 2015. This book describes the experiences from diagnosis to life after treatment.
Vermillion, London, UK, 2018
This list directs you to websites containing personal stories in both written and video format, and may include blogs and online forums. The information contained in these links reflects the personal experiences of individuals and does not constitute evidence-based research or information.
Counterpart (formerly BreaCan) is a unique free information and support service for Victorian women living with breast or gynaecological cancers. Women can speak with peer support volunteers who have all experienced cancer and confronted the decisions that arise during and after treatment.
This is a collection of personal stories from women who have experienced genetic breast or ovarian cancers.
This comprehensive book explores decision making in relation to breast cancer treatment, in particular surgical interventions and reconstruction surgery. The book features 14 personal stories of women with a range of different personal stories about their breast cancer experience. (Quality Medical Publishing, Missouri: 4th edition, 2011)
'The Beacon' newsletter is published quarterly by Breast Cancer Network Australia (BCNA) and features many personal stories of women who have been through breast cancer treatment. BCNA also hosts online forums on a range of topics which feature personal stories of women confronted by breast cancer decisions.
Also refer to the Personal Stories pages of the Life After Treatment navigator topic and the other information navigator topics available.