How to Be an Advocate for Yourself or a Loved One: Patients and their families have the right to participate in their health care. It is important that you feel comfortable with the team of people providing care for you or your loved one. Use the links detailed below to help you gather information so you are prepared to communicate effectively. Some suggestions for you as you or your loved one deal with diagnosis and treatment:
I. Learn the basics of your disease. As a patient, you may not want all the details and statistical information, and that is absolutely fine. Some patients respond better by forgoing the details and facing each day with a clean slate. Others prefer to soak up as much information as possible. Either way, make sure that you know the name of your disease and how it affects your body. Learn the difference between scans, what your blood counts mean, and how you should respond if you experience a side effect. The National Cancer Institute, American Cancer Society, Breastcancer.org, the American Society of Clinical Oncology and the Young Survival Coalition all provide detailed information about breast cancer. Ask your doctor or nurse for local support organizations that provide additional educational information.
II. Inquire about your treatment options. Each type of breast cancer is treated differently. No matter what the diagnosis, be sure to understand all options. Is surgery neccesary? What symptoms might be expected? If the patient does not respond well to a certain drug, are there alternatives available? Once you educate yourself about the basics of the disease, you will be able to discuss these options with the physician. In addition to the organizations listed above that can assist in your education, the Foundation of Informed Medical Decision Making and the National Comprehensive Cancer Network both provide information that will be helpful with respect to options. If you would like to read more about clinical trials, consult the National Cancer Institute. Finally, ask your doctor or nurse for a referral to an oncology social worker who can help explain your options to you.
III. Create a list of questions for physicians each time you have an office/hospital visit, and make sure they answer them in a way you can understand. You may want to record your conversations with the health care team, either on paper or digitally. For help regarding important questions, visit the National Cancer Institute (NCI) website and read “What You Need To Know About™ Breast Cancer”. Add your own questions, and make sure to write them down. Anything that feels important to you should be important to the physician.
IV. Seek second opinions. Don’t ever feel guilty for seeing another physician. Most doctors would encourage this, and it will help provide peace of mind for the patient. For physician recommendations, consult your doctor, friends, nurses, social workers, physician listings on hospital websites, etc. The NCI also offers help for you to find a doctor or treatment facility.
V. Share everything with your physician. If you are worried about anything that pertains to your health (physical or emotional), write it down and ask your health care team. Sometimes the mere act of writing it down is calming.
VI. Always keep a current list of medications with you and bring copies to every doctor you visit. Provide copies for caregivers as well, complete with dosage details. Make sure you update the list when necessary. Set your phone alarm to remind you to take medications, and organize them in a container divided into each day of the week (available at drug stores, grocery stores and other stores that sell medical products). Make sure you keep track of your medications so you know when you are running low. You never want to miss a dose.
VII. Keep an organized file to include scan results, blood counts, physician reports, pharmacy receipts and any other health information. This will help you when you need to refer to something specific. Separate each topic into a different folder and organize the folders in a box or filing cabinet. If your physician does not automatically give you copies of all your results, request them!