Learning you have HR+/HER2- breast cancer can be life-changing. But it may help to know that along with doctors and experts helping guide you through treatment, you also have an important advocate on your team: Yourself.
You’re an active decision-maker in your care. By learning what you can, asking questions, and connecting with resources, you strengthen your support and can feel more in control of your journey.
Here are some ways to step out and speak up.
Know Your Rights as a Patient
Understanding your rights can help you feel more in control and respected throughout your care. Most hospitals and clinics have a Patients’ Bill of Rights. Ask your team for a copy. It should include things like:
- Timely access to medical care
- Access to your records. You should be able to request copies of pathology reports, imaging, lab results, and genetic tests.
- Treatment with dignity and respect
- No discrimination on the basis of age, sex, race, ethnicity, national origin, language, disease, disability, or religion.
- Easy-to-understand information about your diagnosis and treatment options from your care team. You’re entitled to full, clear explanations of your diagnosis, test results (including genetic testing), and treatment options.
- Time for asking questions so that you can make informed decisions about your health. No question is too small or unimportant.
- Right to request professional qualifications of your provider
- Confidentiality and privacy with your provider
- Right to withdraw your consent, delay, or otherwise refuse examination, intervention, or treatment. You can say yes or no to treatments, choose among options, or hold off on treatment for more consultation.
Use Your Voice
Some people are naturally gifted at skills like communication and negotiation, but many aren’t. Luckily, everyone can learn tools for better self-advocacy.
The goal is to keep your eye on the prize and prioritize your needs. This may mean stepping out of your comfort zone. During a cancer treatment journey, you’ll advocate for yourself not only with health care professionals, but also insurance companies, schedulers, employers, and family and friends. These interactions all take different communication strategies.
One key is being proactive. When you go into appointments, calls, work, and social settings knowing what you need, you know what to ask others for. This may mean spending time tuning in to you. Be intentional about carving out time to think through what you want and where your energy needs to go.
The more you can lean on a problem-solving mindset, the more effective your communication can be. Your support team should feel like your teammates. You’re working toward the same goal.
Educate Yourself About Your Diagnosis
You may have heard the term “health literacy.” That means being able to understand and use medical information to make decisions. It doesn't mean you have to be an expert with a medical degree. You just need to learn enough about your disease to feel a sense of confidence about what’s happening with your care.
You can boost your health literacy with a few practices:
- Take notes or ask your doctor to write things down. Bring a trusted friend or family member to be your note-taker so you can focus on the conversation at hand.
- Compile what you learn in appointments into one place. You might keep a binder or notebook with a folder for things like lab reports and pieces of mail.
- Repeat back information to confirm understanding. ("So what you're saying is…?")
- Use words and examples that make sense to you. Ask your doctor to explain it like they would to a friend or family member.
- Review info between appointments and come back next time with questions.
Knowing more about your disease may help ease your anxiety about the future. You can’t predict what will happen. But by taking away some of the unknown, you can have more energy to handle the unknowable.
As you learn more on your own, be sure you’re relying on sound sources. Some trusted sites for health information include:
- American Cancer Society
- National Breast Cancer Foundation
- CDC
- National Cancer Institute
Look for information tailored to HR+/HER2- and your specific genetic mutations. Confirm what you learn with your doctor to be sure you’re reading reliable information.
Ask Questions
It’s OK if you don’t understand what your doctor says the first, second, or even third time. Keep asking for explanations until you get it. Ask where you can go for more information.
Use these questions as a jumping off point to make a list of your own for your next appointment.
Disease basics
- What’s my breast cancer subtype? What does that mean for my treatment and prognosis?
- What genetic mutations do I have? How does that affect my treatment and prognosis?
- What are some of the statistics I should know about people with this type of breast cancer?
- Who can help me better understand the costs and insurance coverage for treatment?
Testing and diagnosis
- What tests will I have to fully diagnose my cancer?
- Do the tests have any risks?
- How should I prepare for the tests?
- Where do I go for testing, and how long will it take?
- Should I bring someone with me to the appointments?
- How soon will I know the results and who will explain them to me?
- How can I get a copy of the pathology report and other test results?
Treatment
- What are my treatment options?
- What will happen if I do nothing?
- How soon should I start treatment?
- How do my breast cancer mutations affect my treatment options?
- How do my age, sex, overall health, and other factors affect my options?
- What if I am pregnant, breastfeeding, or planning to become pregnant?
- What are the goals of treatment?
- How do I get a second opinion?
- How long do I have to decide about treatment?
- How will you know treatment is working?
- What are the chances that my cancer could come back after treatment?
- Will I need monitoring after my treatment course ends?
Treatment side effects
- What are the side effects of the treatment you recommend?
- How might treatment and its side effects change my daily life?
- Does the cancer itself cause any side effects?
- Should I worry about any serious or life-threatening side effects?
- Are there any long-term or permanent side effects?
- What symptoms should I report right away, and who do I contact?
- What can I do to prevent or relieve the side effects of treatment?
- How much will I have to pay for my treatment? What help is available to pay for medicines and other treatment?
Clinical trials
- Are there clinical trials for my specific breast cancer that I may qualify for?
- What is being tested in the clinical trial? Has it been used for other cancers?
- What are the risks and benefits of participating?
- How long will I be in the clinical trial?
- Will I be able to get other treatment if this doesn’t work?
- Will the clinical trial cost me anything?
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
U.S. Department of State: “Patient Bill of Rights and Responsibilities.”
National Coalition for Cancer Survivorship: “Becoming a Self-Advocate.”
CDC: “What is Health Literacy?”
Wisconsin Breast Cancer Coalition: “Advocating for Yourself.”
National Comprehensive Cancer Network: “Questions to Ask About Cancer Care.”
