Decision Making
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.
Last Updated: 9 July, 2024 10:55 am
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 available to you in a form that you understand – the Information Navigator is a tool that can assist in this process
- The chance to talk with your treating health professionals to gain their expert opinion and advice
- The freedom to seek a second opinion
- The ability to manage your worry and anxiety about making the 'right' decision – often it is about making the best decision you can with what is available to you
- A balance between the 'pros and cons' of different options to determine the most preferable option
- The support of friends and family.
Information to help you make decisions
In this navigator topic, there is information in the resources listed on:
- Choosing your health care practitioner or specialist
- Feeling informed and empowered during and after treatment
- Managing anxiety and worry to help you make the best decisions you can
- Preparing for appointments to help you gain information you need to make decisions
- Specific topics not covered in the other navigator topics – in particular, decision making around:
- Participating in drug trials
- Undergoing genetic testing.
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:
- Fertility preservation
- Surgery
- After mastectomy – includes information about choosing breast reconstruction or going 'breast free'
- Chemotherapy
- Trastuzumab (Herceptin)
- Hormonal treatment
- Healthy eating and exercise
- Life after treatment – includes information on work, financial and legal issues relevant to living with cancer.
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.
- How do I choose the best health practitioner/cancer specialist for my needs?
- Am I able to talk to my doctor/breast care nurse? Do they listen to my questions and try to provide me the information I need?
- Who can I bring to my appointments?
- What are my treatment options?
- What are the side effects, risks and benefits of this treatment?
- What are the risks of not proceeding with the treatment?
- Who can I talk to for help in making decisions?
- Who can help me to understand my pathology report?
- What are the costs involved in treatment?
- What costs are covered by Medicare/Pharmaceutical Benefits Scheme? Private Health Insurance?
- What are my rights as a patient of this service?
- Will I need to take time off my work/study/other commitments?
- How will I care for my children during treatment?
- Where can I talk to someone who has been through this treatment?
- What are the advantages and disadvantages of going on a clinical trial?
- How do I get a second opinion?
- What do I do if I am unhappy with my treatment?
- What does 'reducing my risk' mean for me?
- Can I use complementary therapies - e.g. massage, reflexology, supplements?
- What support is there available for my partner/family?
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 (AUS)
Counterpart is a unique free information and support service for Victorian women living with cancer. 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.
Cancer Council Victoria (VIC)
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.
Breast Cancer Network Australia (AUS)
An Australia-wide organisation that provides information, support and advocacy on breast cancer issues, from diagnosis through to life after treatment.
Breast Care Nurses (McGrath Breast Care Nurse Directory) (AUS)
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
Pink Hope provides support and information to Australians at an increased risk of, or diagnosed with, genetic breast and ovarian cancers.
This list includes links to key pieces of evidence-based information directly related to breast reconstruction, and includes downloadable fact sheets, pamphlets, PDF documents and web pages.
Scroll down for decision support: Background information and getting advice; Treatment; Clinical trials and Hereditary breast cancer and risk.
Background information and getting advice
Cancer Council - Breast cancer: your guide to best cancer care 2021 (AUS)
A guide to 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.
Cancer Council - What to expect - Cancer 2018 (AUS)
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.
Call someone - Cancer Survival Guide 2018 (AUS)
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.
Aboriginal health - Cancer Survival Guide 2018 (AUS)
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.
Treatment
Counterpart - Care plans - webinar 2022 (AUS)
Presenter Nicole Kinnane from Peter MacCallum Cancer Centre explains the benefits of a Survivorship Care Plan, how you might go about getting one. She takes us step-by-step through the Australian Cancer Survivorship Centre's My Care Plan tool for 6 major types of cancer: early stage breast, early stage bowel, localised prostate, early stage melanoma, uterine (endometrial) and non-Hodgkin lymphoma. Online proformas are available for people with other cancers who’re interested in creating their own care plans.
BRECONDA - 2023 (AUS)
BRECONDA (Breast Reconstruction Decision Aid) is an online decision-making tool to help you make decisions about breast reconstruction.
Breast Cancer Trials - The Neoadjuvant Patient Decision Aid - 2021 (AUS)
This tool, to be used in conjunction with your treating team, has been created for women recently diagnosed with early-stage breast cancer, for whom treatment with chemotherapy and/or hormonal therapy before surgery may be an option.
Cancer Council NSW - Making treatment decisions 2017 (AUS)
In this 6th episode of the 'The thing about cancer' podcast, Julie McCrossin and Professor Lyndal Trevena discuss the process of making treatment decisions.
Jean Hailes for Women's Health - Making decisions about your health (AUS)
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.
Ottawa Hospital Research - Ottawa Patient Decision Aids 2023 (CAN)
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.
Cancer Council Victoria - Making treatment decisions 2023 (VIC)
Suggestions for steps you might take in making decisions about your treatment.
Clinical trials
Cancer Australia - Australian Cancer Trials (AUS)
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.
Memorial Sloan Kettering Cancer Centre - What is a clinical trial? (US)
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.
Breast Cancer Trials - 'What is a clinical trial?' (AUS)
Explanation of what a clinical trial is, and how and why people might choose to take part. Links to current clinical trials.
Cancer Council Victoria - Victorian Cancer Trials Link
Cancer Council Victoria resource helping Victorians with cancer to find new treatment options.
Hereditary breast cancer and risk
Cancer Australia - Your Risk and Breast Cancer (AUS)
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.
Breast Cancer Network Australia - Breast cancer in the Family (AUS)
This article includes information on the link between cancer and family history, what to do reduce your risk of developing cancer, and available resources.
FORCE - How do I decide? (US)
Not for profit American organisation for people with a family history of cancer. Watch the webinar 'How do I decide?' which includes discussion on weighing up treatment options.
Westmead Breast Cancer Institute - Family history of breast cancer 2022 (AUS)
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.
Breast Cancer Network Australia - Family history (2019, AUS)
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.
Counterpart - It's in the Genes 2021 (AUS)
Dr Yoland Antill, Medical Oncologist and Cancer Genetics specialist explains how genetics can influence cancer and determine treatment options.
Family history, genetics and cancer 2022 (UK)
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.
Cancer Council Victoria - Family History and Cancer 2022 (AUS)
This page explains the risks of genetic cancers as well as the steps you can take to reduce your risk. Scroll to Breast cancer.
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.
'The complete guide to breast cancer: how to feel empowered and take control' (book) by T. Greenhalgh & L. O'Riordan
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
'Breast Cancer, Taking Control' (book) by J. Boyages
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)
‘A Woman’s Decision, Breast Care, Treatment and Reconstruction’ (book) by K. Berger and J. Bostwick
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)
'The Human Side of Cancer' (book) by J. Holland and S. Lewis
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)
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 (VIC)
Counterpart is a unique free information and support service for Victorian women living with cancer. Women can speak with peer support volunteers who have all experienced cancer and confronted the decisions that arise during and after treatment.
Pink Hope - Personal stories (AUS)
This is a collection of personal stories from women who have experienced genetic breast or ovarian cancers.
'A Woman's Decision - Breast Care, Treatment and Reconstruction' (book) by K. Berger and J. Bostwick
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)
Breast Cancer Network Australia - 'The Beacon' newsletter (AUS)
'The Beacon' e-magazine is published twice yearly 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.
