In Spring of 2021, I joined twenty-seven women from around the country to be trained as a Living Beyond Breast Cancer Hear My Voice Metastatic Breast Cancer Advocate. This advocacy training “provides the tools and training to help people living with metastatic breast cancer make a difference in their physical and digital communities.” Collectively, Hear My Voice (HMV) Advocates have reached over 100,000 people nationwide, and we’re still working to educate, pass new legislation, and raise more awareness and money for MBC research.
From this training and my subsequent term as an HMV advocate, I formed friendships with other women like me. In this week’s post, I have the honor to highlight Karla Mans Giroux and Roxana Guerra Ponce.
Karla and Roxana, two amazing HMV Advocates, are living with metastatic breast cancer (MBC) and have no evidence of disease (NED). No evidence of disease or no evidence of active disease (NEAD) means that there is no detectable evidence of breast cancer in your body or that cancer shows a complete metabolic response by positron emission tomography [PET scan] or sclerotic healing of bone metastases on computed tomography or magnetic resonance imaging [CT/MRI scan].
I wanted to find out more about what this means for these two active and inspiring HMV advocates. In this interview we dive into:
- Roxana and Karla’s breast cancer stories (1:47-7:40)
- Meaning of NED and how they manage their maintain their physical, emotional, and spiritual health (8:03-12:15)
- Differences between NED, remission, cure (13:12-16:47)
- How being NED contributes to their understanding of living with MBC diagnosis and thier MBC advocacy (17:09-21:42)
- How their stories contribute to the MBC narrative and may help to inform the MBC paradigm (23:53-28:58)
- Last thoughts on what resonates with them and their advocacy (30:47-End)
NEXT WEEK: Guest Blogger Jenna Shillingburg returns to write about “all things bookish.”
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