Metastatic Breast Cancer Advocacy

Now that you’re officially part of the “worst club with the best members”—cancer survivors and thrivers—you might be curious about ways to give back. The challenges you’ve faced have connected you with a community bound by resilience and strength. With October being Breast Cancer Awareness Month, we’re reminded that there’s still so much work to be done. It’s a perfect time to reflect on how we can collectively turn our experiences into meaningful advocacy. 

Metastatic breast cancer (MBC), also known as Stage IV breast cancer, occurs when cancer cells spread beyond the breast and nearby lymph nodes to other parts of the body, such as the bones, lungs, liver, or brain. While advancements in treatment have made it more manageable, MBC remains incurable. An estimated 168,000 women in the United States are currently living with this diagnosis. 

According to the American Cancer Society, the 5-year relative survival rate for Stage IV breast cancer in women is 31%. However, survival rates vary depending on factors such as age, cancer type, and area of metastasis. For instance, the 5-year relative survival rate for Stage IV inflammatory breast cancer is 19%, while for Stage IV triple-negative breast cancer, it’s 12%. Despite these statistics, it’s important to note that some women may live 10 years or longer with metastatic breast cancer, and survival rates are improving, especially among younger women.

The sobering reality is that nearly 30% of patients initially diagnosed with early-stage breast cancer may eventually develop MBC. These statistics underscore a critical need for increased research, improved treatments, and heightened awareness. This is where advocacy becomes essential, as #Stage4NeedsMore.

Becoming a breast cancer advocate is a deeply personal journey that can take many forms, each as unique as you are. Here are some avenues to consider:

1) Education and Awareness

• Share Your Story: Personal narratives are powerful tools for raising awareness. Consider speaking at community events, writing blog posts, or using social media platforms to share your experiences.
• Workshops and Seminars: Organize or participate in educational sessions that inform others about breast cancer prevention, early detection, and the realities of MBC.

2) Research Advocacy

• Clinical Trials Participation: Engage in clinical studies to contribute to scientific advancements.
• Advisory Boards: Join patient advisory panels to ensure that the patient perspective is included in research initiatives.

3) Policy Advocacy

• Engage Lawmakers: Advocate for policies that support increased funding for breast cancer research and improved patient care.
• Public Speaking: Testify at legislative hearings or meet with elected officials to discuss the needs of the breast cancer community.

4) Peer Support

• Mentorship Programs: Offer guidance and emotional support to newly diagnosed patients.
• Support Groups: Facilitate or participate in groups that provide a safe space for sharing experiences and coping strategies.

5) Fundraising

• Community Events: Organize walks, runs, or other events to raise funds for research and support services.
• Online Campaigns: Use crowdfunding platforms to support specific projects or individuals in need.

We recently had the privilege of interviewing Andrea Hans, an advocate trainer for Tigerlily Foundation who is making significant strides in women’s health advocacy. With a decade of experience in clinical and executive leadership roles in community health and nonprofit organizations, Andrea now works closely with government agencies in Washington DC to drive innovative healthcare solutions. 

In our recent interview, she shared her experience as an advocate and advocacy trainer for the Tigerlily Foundation, a role she has held since 2022. Andrea’s work focuses on empowering young women to understand their health risks and become effective self-advocates. During our conversation, she provided valuable insights into her training approach and offered practical tips for individuals looking to find their own path to advocacy. Her advice emphasized the importance of starting small, utilizing social media, attending workshops, sharing personal stories when comfortable, and volunteering with aligned organizations. 

Andrea’s multifaceted approach to advocacy, combining grassroots training with high-level policy work, showcases the diverse ways one can contribute to important health causes.

Several organizations provide training programs to help you become an effective advocate. 

Tigerlily Foundation

• ANGEL Advocacy Program: Focused on empowering young women of color (ages 21-50), this program addresses disparities in breast cancer care through education and advocacy.

National Breast Cancer Coalition (NBCC)

• Project LEAD® Institute: An intensive science-based training program that prepares advocates to work effectively with scientists, policy-makers, and the media.
• Public Policy Training: Offers tools and resources to advocate for legislative changes at the national level.

Susan G. Komen

• Advocacy Programs: Provides opportunities to influence public policy and increase funding for breast cancer research.
• Research Advocacy: Engage with researchers to ensure that patient needs are central to scientific advancements.

FORCE (Facing Our Risk of Cancer Empowered)

• Advocacy Training: While focused on hereditary cancers, FORCE offers resources and training for those interested in advocating for better prevention, detection, and treatment options.

Remember, there’s no one-size-fits-all approach to advocacy. Your journey should align with your passions, skills, and personal experiences. Here are some tips to tailor your advocacy path:

• Identify Your Strengths: Are you a compelling writer, a persuasive speaker, or a strategic thinker? Leverage your talents to maximize your impact.
  
• Focus on What Resonates with You: Consider the aspects of your breast cancer journey that affected you most deeply. Was it access to care, emotional support, or treatment options? Channel your efforts into those areas.
  
• Set Realistic Goals: Advocacy can be as simple as supporting a friend or as involved as lobbying for policy changes. Determine what level of commitment fits your life.

While individual efforts are invaluable, the true strength of advocacy lies in collective action. By joining forces with other survivors, patients, and dedicated individuals, we can amplify our voices to drive meaningful change. Whether you’re advocating for increased MBC research funding, improved access to clinical trials, or enhanced support services, your contribution is crucial.

As we observe Breast Cancer Awareness Month, let’s recommit ourselves to the fight against breast cancer in all its stages. By becoming advocates, we honor our own journeys and pave the way for better outcomes for future generations.

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Ready to take the next step in your advocacy journey? The Outcomes4Me app is here to support you every step of the way. Stay informed about the latest research, connect with resources, and track your health—all in one place. Download the app today and become an empowered advocate for yourself and others. Together, we can make a difference.