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.

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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.