Since your treatment will be ongoing, you will need to rely on your oncologist and the rest of your medical team. But doctors, especially good ones, are increasingly busy and may have large caseloads. You can't always rely on getting the very best care unless you or someone who cares about you are willing to advocate for you. This can take many forms, from making sure your test results are in your doctors hands, to writing down your list of questions--but one factor is central: learning about the disease you are living with.
There is nothing simple about metastatic breast cancer. Though generalizations can certainly be made, breast cancer is not a single disease, and its course is unpredictable. Once breast cancer spreads to distant parts of the body, it is generally treated as a chronic disease, to be managed and controlled. So, there will be ongoing treatment decisions and many "course corrections" along the way, as your body and your individual cancer responds to the many treatments available.
There is a lot to learn.
While you may not be trained in oncology, you--or a family member or friend acting as your advocate--can develop real and specific expertise in the particular kind of breast cancer you have, and its potential treatments. It's important to remember that you are the real expert in what matters to you, and that although you will be advised by expert physicians, your treatment choices are just that: your choice. Learning some of the basic facts about your cancer and its treatment will help you to be a full participant in making treatment decisions.
My objective in creating this website is to help you to become an informed patient, working in partnership with your doctors. Why is this important? Some recommendations your oncologist makes will be guided by high-quality research, for example using some form of anti-estrogen therapy for ER-positive disease. But other recommendations, for example the exact best sequence of anti-estrogen therapy for you, are based more on common practices and clinical experience. Since all treatments have side-effects, and you may tolerate one drug much better than another, how you feel on a given treatment becomes a critical issue. Since you are living the experience of cancer treatment, you'll get better care if you not only share how you're feeling from visit to visit, but understand your doctor's rationale for your treatment.
Why is so much still unknown, with all the research being done?
Every case of metastatic breast cancer is highly individual--because of the pathology of the tumor, the mechanism of its spread, and your own unique biology. All of these are subject to change over time. Not even the most skilled oncologist can accurately predict exactly which treatment will work at a particular time and what the course of disease is likely to be. Ongoing research enables doctors to make educated guesses about the most effective treatments, based on statistical probabilities of success. Increasingly sophisticated biological markers are beginning to take some of the guesswork out of treatment decisions--but this research still has a long way to go. But no treatment works in every case. New research is constantly evolving, and it takes time for the latest findings to filter down to the clinic.
What you need is good information about your particular disease and the best treatments available to you at the time you need them.
Once there were few treatment options for women with metastatic breast cancer. Now there are many hormonal and chemotherapy regimens, as well as other targeted therapies, some of which are accepted as a standard of care, and others which are controversial, highly toxic, and still unproven, since they are undergoing clinical trials. You can see why treatment choices are often extremely difficult, and require a degree of self-knowledge as well as unbiased medical consultation and information.
This doesn't mean spending all your time researching and reading up on metastatic breast cancer! Hopefully, you'll only focus on this at certain times, for example: when a treatment fails and another choice must be made, or when you are dealing with a problematic symptom or side effect. Knowing where to turn at these times helps you to feel empowered and in control--and frees you up to live your life as fully as possible at other times.