Breast Cancer Patient Information Resources
One of my specialist surgical colleagues once commented that he couldn’t understand why I provided so much information about breast cancer on my website which was available for anyone to access, free of charge, and that he preferred to restrict his information sharing to his own patients within the confines of a clinical consultation. This is not an attitude I share. I am a great believer in the power of knowledge, and whilst the information I provide is primarily for the benefit of my own patients, I am more than happy to make it available in the public domain for the use of anyone.
I have curated the information resources below specifically aimed at women with diverse information needs. Publications produced by public health agencies by necessity need to be suitable for all literacy levels, and as such may not provide the level of detail required by women with high information needs, which is why I have also included some more detailed medical information.
There is no shortage of information out there if you are newly diagnosed with breast cancer. But the omnipresent internet is definitely the game changer, and not always in a good way. See Use of the Internet. When you type the words “breast cancer” into your browser, you’re faced with literally millions of pages. And a breast cancer diagnosis is no longer spoken of in hushed tones; it is often blogged and tweeted about by women chronicling their journey through treatment, sending selfies from the chemo chair for all to see.
The problem isn’t access to information anymore; instead, it’s too much information, with no filter. Some of what you can find online is credible; some isn’t. Some information will be relevant; most won’t be. Most important, the critical information that you need to make decisions for yourself and your particular case is actually quite limited relative to the huge amount of information that’s out there. Getting information should be empowering, but too much information without the correct guidance to figure out its relevance can have the opposite effect.
Rumours, misinformation, and half-truths: breast cancer seems to attract more of these than almost any other disease. By the time a new patient has come to see me for the first time, she’s usually learned all kinds of “facts” about breast cancer from friends, from family members, and from looking online—and is terrified about her prospects as a result. Although I’m not entirely sure why this should be the case, I think it has to do with how common the disease is. Everyone seems to know something about it and is willing to share their information, some of which is true, but most of which isn’t applicable to any individual case. When a new patient comes to my office, what she’s looking for is clarity and a trusted source of information, so that she can make informed decisions about her treatment and recovery without any more stress and anxiety than necessary.
What I have been told by so many patients is that the time between diagnosis and actually meeting with the doctor and developing a plan of attack is the toughest. It is during this period when you (and often your spouse or family) feel so vulnerable, with no one to answer your questions. This is the time when, desperate for information, you can end up burning the midnight oil (who can sleep after receiving a diagnosis of breast cancer?) trolling the Internet for any meaningful information you might find. See Before Your Consultation with the Breast Surgeon.
Going online is a part of the information-seeking process for many women newly diagnosed with breast cancer, and you or your family members may search out information at various points in your course of treatment. Should you choose to refer to online resources there are many that are reputable and up to date, but online information acquisition is usually limited by the inability to discern what, if anything, you are reading is relevant to your particular case. Even reputable sources cannot usually provide individually tailored information. The information below is all the more helpful when you have a top-notch team advising you about how the information relates to your particular case.
General Breast Cancer Information
Guide for Women with Early Breast Cancer-Cancer Australia
Understanding Breast Cancer- Cancer Council
Primary Breast Cancer Resource Pack- Breast Cancer Care United Kingdom
Breast Cancer Answers – American Society of Clinical Oncology (ASCO)
Guide to Understanding Treatment Decisions
About Breast Cancer- Breast Care Network Australia( BCNA)
Optimal Care Pathway for Women with Breast Cancer
About Breast Cancer-UK cancer research
What is Breast Cancer? European Society of Medical Oncology (ESMO)
A Woman’s Guide to Breast Cancer Treatment
Breast Cancer Patient Guide Surgery and Treatments Workbook
Breast Cancer Surgery
General
Patient Guide to Breast Cancer Surgery and Treatment
Breast Cancer Surgery Handbook
Calvo Jatoi2016_Chapter Surgical Considerations In TheMan
Breast Conserving Surgery
Giuliano Mabry 2011 Chapter Lumpectomy
Breast-conserving surgery: the balance between good cosmesis and local control
Leidenius 2018 Chapter Surgery To The Breast Conser
Cox 2015 Chapter Breast Conserving Therapy
Mariotti 2014 Chapter Conservative Surgery And On Coplas
Mastectomy
Moo Simmons 2015 Chapter Mastectomy For Invasive Breast Cancer
Mariotti 2014 Chapter Conservative Mastectomy
Oncoplastic Breast Conserving Surgery
Chen2011 Chapter Oncoplastic Techniques For Breast
Sanidas Fitzal 2018 Chapter Oncoplastic Breast Conserving
Axillary Surgery
Bussone 2014 Chapter Sentinel Node Biopsy And Axillary Dissection
Systemic Therapy
General Information
Adjuvant Systemic Treatment for Breast Cancer- An Overview
Lowe Somlo 2011 Chapter Adjuvant Systemic Therapy
The role of adjuvant systemic therapy in patients with operable breast cancer
Chemotherapy
Understanding chemotherapy booklet August 2018
BCI Chemotherapy 2017 WEB Update
Chemotherapy for Breast Cancer
3078 GP Factsheet Common Chemotherapy Side Effects
Nirsimloo Cameron 2016 Chapter Adjuvant Systemic Treatment for Breast Cancer
BCC 233 Fect Chemotheraphy 2019
Progress in adjuvant chemotherapy for breast cancer: an overview
Targeted Anti HER2 Therapy
HREC Information About Trastuzuma Herceptin Early Breast Cancer
BCC 41 Trastuzumab Herceptin 2019
BCC 235 Pertuzumab Final March 2019
Herceptin Adjuvant Core Patient Brochure New
Endocrine Therapy
BCI Hormonal Therapies 2017 WEB update
HTC Hormonal Therapies Early Breast Cancer
Burstein 2011 Chapter Adjuvant Endocrine Therapy
BCC 27 Ovarian Suppression 2018
Radiation Therapy
Understanding Radiation Therapy Booklet December 2019
Adjuvant Radiotherapy for Breast Cancer
Bloom Buchholz 2011 Chapter Whole Breast Radiotherapy
Jagsi Pierce 2011 Chapter Postmastectomy Radiation Therapy
Sayan Heimann 2016 Chapter The Role of Radiotherapy In Breast Cancer
You will need the Adobe Reader to view and print these documents.