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.