Waiting For Cancer To Come

After hearing these women’s powerful stories, what can we do to make women’s lives better, and what lessons have we learned? This podcast brings BRCA positive women’s voices together to describe what medical professionals and society at large must do to support them in facing their cancer risk. Their stories have implications for each of us and for larger policy issues.

A BRCA positive mutation diagnosis has many long-term consequences for women’s lives beyond surveillance and surgery, and they all center on “finding a new normal.” Whether it’s coming to terms with their post-surgical body, recovering from family estrangement, or finding a place for BRCA in their lives, every BRCA positive woman moves along some pathway toward her new normal.

One of the most publicly debated aspects of the BRCA experience is the benefits and dangers of preventive surgery, which to some is live-saving and others is an unnecessary invasion of women’s bodies. This podcast delves into the surgery experience through women’s eyes – more often that not, women feel greatly empowered by surgery and it is this decision more than any other that allows them to take control of their lives and conquer their risk for cancer.

One of the most intimate decisions BRCA positive women make is what to do about their test results and how face their cancer risk. No woman wants to be waiting for cancer to come, but what can they do about it? This podcast looks at the personal factors women use to determine their cancer risk – often so different from their statistical medical risk – and tells the stories of women who make the decision of surveillance for breast or ovarian cancer.

This podcast begins women’s story of BRCA testing with the decision-making process that leads to the test. Why do women get tested, who helps them make this decision, and what women in this country aren’t even getting tested? It importantly lays the groundwork for the concept of women “being ready” – whether to get tested, hear the devastating news of their BRCA positive status, get surgery, or move forward in their new lives as BRCA positive women.

Genetic testing upends the lives of women across the country and Waiting for Cancer to Come walks through their journeys of despair, challenges, victories over their cancer risk, and ever-changing family dynamics. This podcast delves most deeply into the complications that arise among family members when BRCA disrupts family dynamics and puts the strength of family ties to the test. While some families become closer and rally together in their fight against cancer, other falls apart, unable to bear the weight of their cancer risk. You will hear women’s stories that reveal how diverse individual reactions can be, from complete surprise to acceptance among women who feel they "always knew."

This podcast focuses on the genetic testing industry as a whole. Driven by the dramatic story of the genesis of the genetics testing industry, it provides the context for women’s experiences with BRCA testing by describing the history and larger implications of genetic testing and the proliferation of BRCA testing in particular. A multi-billion dollar genetic testing industry is growing every year, and companies going pink for breast cancer awareness is more common than not, but few books have explored the dynamics involved when these cultural phenomena meet – from the perspectives of women who live this reality every day.

This Podcast sets the stage for the rest of the book, starting with a poem composed of lines from women’s interviews and then launching into one woman’s deeply moving story that exhibits many of the book’s themes. This podcast ties in my own experience with breast cancer and loss and the lessons I learned about life, healing and the journey toward my own "new normal."