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What Breast Cancer Patients Aren’t Told About Lymphedema

S3E19 Lymphedema is one of the most life-altering and least-discussed side effects of breast cancer treatment. For many survivors, it becomes a chronic, progressive condition that dramatically impacts quality of life — yet patients are often undereducated, underprepared, and under-supported. In this episode of Besties with Breasties, Sarah and Beth are joined by Amy Rivera, Executive Director of Ninjas Fighting Lymphedema Foundation and author of Drop the Skirt: How My Disability Became a Superpower. Amy shares her powerful personal story of living with primary lymphedema for over 30 years before being properly diagnosed, and explains how the condition affects both cancer survivors and those born with lymphatic disorders. This conversation explores what lymphedema actually is, why it’s frequently dismissed as a “vanity issue,” how it’s currently treated, and why patient advocacy is essential. The episode also highlights the urgent gaps in education, insurance coverage, and long-term care — and what patients can do to protect themselves. In This Episode, We Discuss: What lymphedema is and how the lymphatic system works The difference between primary and secondary lymphedema Why breast cancer treatment increases lymphedema risk How misdiagnosis and delayed care worsen outcomes Current treatment standards and their limitations Insurance barriers and lack of compression coverage The emotional and psychological toll of lymphedema Why patient advocacy and education are critical How Ninjas Fighting Lymphedema supports patients nationwide About Besties with Breasties & Faith Through Fire Faith Through Fire is a 501c3 Non-Profit. Our mission is to reduce the fear and anxiety that breast cancer patients feel and replace it with hope and a path toward thriving. We do this through peer mentorship, which can be implemented nationwide. We host educational supports in-person and virtually to help overcome the trauma of breast cancer. Learn more or become a supporter at faiththroughfire.org Subscribe for more episodes and survivor stories. Connect with us on social media: Facebook:   / faithroughfire   Instagram:   / faithroughfire   If this episode helped you better understand lymphedema or empowered you to advocate for your care, please like, subscribe, and share it with someone who needs this information.

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