Self-Advocacy Remains Critical During Breast Cancer

In part two of CURE’s Breast Cancer Awareness Month webinar series on connecting with the community, we partnered with Susan G. Komen Foundation and Roswell Park Comprehensive Cancer Center to learn how patients with breast cancer can support themselves throughout diagnosis, treatment and survivorship.

In particular, we spoke with Miranda Zinn, Helpline Navigator for the Breast Cancer Helpline at Susan G. Komen Foundation, and Jomary Colon, Community Outreach and Engagement Manager at Roswell Park Comprehensive Cancer Center, to see how patients can effectively communicate their needs to their healthcare team and how they can stay informed about their treatment options.

Summary:

0:36 — Effectively Communicating Needs and Concerns to the Healthcare Team

• Patients are encouraged to come to appointments prepared with a list of questions about their diagnosis and treatment options. Bringing a trusted companion for note-taking and support further facilitates clear communication and ensures all questions are addressed.
• Honesty and transparency are crucial for receiving optimal care. Patients should feel empowered to ask questions and express concerns without fear of judgment. Providers are there to help, and open communication allows them to tailor treatment plans effectively.
• For patients with limited English proficiency, requesting an interpreter during appointments is essential. Additionally, gathering relevant medical records beforehand streamlines the process and ensures doctors have a complete picture of the patient's health history.

4:20 — Staying Informed on Treatment Options

• Newly diagnosed patients are encouraged to bring a trusted companion to medical appointments. This person can help take notes, ask clarifying questions and debrief after the appointment to ensure all information is understood.
• Regular communication with healthcare providers is crucial for staying updated on new treatments and clinical trials. Reputable websites like Susan G. Komen, National Cancer Institute and American Cancer Society offer valuable resources for research updates.
• Open communication with healthcare providers allows patients to explore all treatment options, including second or third opinions and alternative therapies, if desired. This empowers patients to make informed decisions about their healthcare journey.

10:06 — Advice to Newly Diagnosed Patients About Advocacy

• Newly diagnosed patients should prioritize their health needs and advocate for themselves, even if they feel shy or intimidated. This may involve asking questions, seeking second opinions and asserting their preferences for treatment.
• Utilize resources like navigators, interpreters and support groups to build confidence and gain knowledge. These resources can provide emotional support, practical advice and information about treatment options and clinical trials.
• Understand patient rights, access medical records and seek second opinions as needed to make informed decisions about your health. By taking an active role in one’s care, patients can improve your health outcomes and quality of life.

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