The Merriam-Webster dictionary defines ‘advocate’ as a verb that means “to support or argue for”. ‘Self-advocacy is defined as “the action of representing oneself or one's views or interests”.1 While the word, advocate might make us think of protests or political signs, that is not always the case. As someone with a breast cancer diagnosis, self-advocacy and being an advocate simply means being a part of your health care team. It means knowing yourself and speaking up for yourself to make sure that your cancer care needs are met.2 Self-advocacy is part of participatory medicine where “patients are actively working alongside their physicians to choose the best course of cancer treatment.”3
You might have been told before to self-advocate when you had certain concerns about your health when it comes to breast cancer and may have wondered what that looks like exactly. Today, we outline how to become an advocate for yourself in order to ensure your needs are being met and your input is being considered.
To advocate for yourself, you must first know yourself. This means reflecting on what’s most important to you, what you value, what your priorities are as you consider treatment options, knowing your body, knowing what your normal is, and paying attention to your symptoms. It is easier to know when something is off if you are in tune with your body. When something feels off, it is important to pay attention to it. Make note of any symptoms you experience, take pictures if you’re able to and speak to your doctor about them as soon as possible.
Do Your Research
Part of being an advocate for yourself is also knowing as much as you can about your breast cancer diagnosis and understanding what’s most important to you as you make treatment decisions. Keep a record of your reports and take notes whenever you meet your doctor or visit your cancer care centre. Make sure your notes can be easily accessed at a later day by recording dates and times.
In addition to taking notes, ask your doctor questions and conduct research from credible cancer sources. If you have treatment or surgery decisions to make, it is important to find out what you can about your treatment options. Your doctor may provide you with several options so it’s important for you to consider how these options, side effects and outcomes align with your priorities, values and overall goals of treatment. By doing this, you can weigh the pros and cons of each option to know what works best for you. When you are doing your research, write down any questions that come to mind and keep track of whether your research is answering them. Once you have conducted your research, any unanswered questions can be directed back to your doctor.
Outside of asking your doctor questions and doing research, speaking to other breast cancer patients can provide you with valuable information. This can be as easy as joining an online breast cancer support community, such as our Canadian Breast Cancer Patient Network. If you go this route, keep in mind that this is simply to get more information and to know about other options that may be available to you that your doctor may not have mentioned. What worked for one person may not be the best course of action for you and the information from these communities should not be used to substitute professional medical advice.
Have a Support System
While the term self-advocacy implies advocating for yourself, by yourself, it doesn’t actually mean that you have to do it by yourself. A breast cancer diagnosis is overwhelming and distressing which means that constantly taking notes of everything might sometimes be too much to do alone. Whenever possible, try to bring a friend or family member with you. They can help you take notes. They also help to provide emotional support as self-advocacy can seem draining. A support system is also vital in practicing self-advocacy if you struggle with finding your voice and speaking up for yourself. A more outspoken family member or friend can give you a voice. While an individual or a few individuals are the ideal support system, organizations can also lend support in self-advocacy. If you have any questions regarding your cancer care, feel free to reach out to the Canadian Breast Cancer Network by emailing us firstname.lastname@example.org or calling us at 1-800-685-8820. We can be your voice if you are having trouble finding yours.