There is an old saying that will be accurate into eternity: “You don’t know what you don’t know.” And so is the case with understanding your diagnosis, prognosis, treatment options, and life during and after breast cancer. Without adequate information that is provided to you in an understandable way, you may be left in the dark and at the mercy of others making decisions for you that may not align with what you would have chosen for yourself. Without such knowledge, you may feel powerless. During a time of uncertainty, which a diagnosis of breast cancer immediately causes, it is important that you receive and understand the information you need to be an active participant in the decisions that lie ahead of you.
Step 1 in this journey of becoming empowered starts with the basics of understanding your diagnosis. Although your diagnosis is “breast cancer,” there is a myriad of types of breast cancers, each acting differently, each requiring different treatments, and each having the potential for a different outcome. So begin by learning the type of breast cancer you have (eg, invasive ductal carcinoma is the most common, but it might be invasive lobular carcinoma [which can travel to totally different organ sites than its more common sister does], or perhaps it is noninvasive breast cancer called DCIS, or a more rare type of breast cancer such as metaplastic breast cancer).
There are also specific prognostic markers of the tumor cells themselves that further define the type of breast cancer you have. Tumor cells that have estrogen and/or progesterone receptors are called hormone positive. You may also see this referred to as “ER-positive” or “PR-positive,” meaning that the cancer is made up of estrogen receptor–positive or progesterone receptor–positive cells. Another marker that is tested for is the human epidermal growth factor receptor 2, also called HER2. If the breast cancer does not have any of these markers, then it is called “triple-negative” breast cancer. Understanding these markers and what they mean will be important for you because it helps you understand your treatment options.
You will also receive information about the grade and stage of your cancer. The grade of the cells tells you how fast it is growing. The stage describes the extent of the cancer in the body, and it very much influences your treatment options, in what order you will likely get them, and what your probability of becoming a long-term survivor might be. You should get to know these pieces of information so well that you can rattle them off like you do your name and address. Without this type of understanding, it will be hard to participate in the decision-making about your treatment, especially when there are several options to choose from.
The next step is to understand the treatment categories and which ones might benefit you now or in the future. Treatments include surgery, radiation, chemotherapy, hormonal therapy, biological targeted therapy, and immunotherapy. Additional tests may include MRIs, CAT scans, PET scans, and other imaging studies. There are also many blood tests, each designed to provide specific information about your body. And there are genetic tests as well that determine if you have a gene mutation that may have caused this type of breast cancer.
Some people learn best with pictures and graphics; others prefer reading information; still others like a combination of different ways to hear and see the information so they can understand it. Make sure to let your navigator know how you learn best so that he or she can provide the right resources to you with the goal that you are truly empowered and can understand this disease, its treatment, and how to continue remaining active during and after treatments. Incidentally, some people do best with what I call “Just in time information.” This means that rather than drowning you with a ton of information all at once, there is an overview provided that shows you the big picture of what lies ahead. Then, as each phase of treatment is ready to start, the navigator and other members of the oncology treatment team can educate you about that specific treatment and engage you in participating in the decision- making when there are various options to choose from.
And remember, you are not just a patient with breast cancer. You are a woman who had a life before this diagnosis and will have a life after this diagnosis. Make sure you empower your treatment team with information about who YOU are so you can be treated for this cancer while also receiving patient-centered care. You may be a wife, a mother, a school teacher, an avid swimmer, a lover of country music, and so much more. They need to know you as a person. They also need to know any significant milestones that may be coming up so they can be dovetailed into the treatment planning process and not sacrificed to this disease. Got a son getting married in 2 months? Then tell them to plan your treatments in a way that you will still feel well on that important day.
You don’t know what you don’t know. Your treatment team doesn’t know you either unless you tell them. Now start getting to know what kind of breast cancer you have and how it differs from others, what impact its special features have on your treatment options, and how you can become knowledgeable enough to actually be part of the decision- making process.
