Understanding BRCA: Genetic Testing, Advocacy, and the Power of Storytelling

The Rose’s Roxann Hayford sits down with Amy Byer Shainman, also known as BRCA Responder, to discuss her passion for patient advocacy and her award-winning work as the author of “Resurrection Lily” and film producer of “Pink & Blue Colors of Hereditary Cancer” and the soon to be released film, “Love, Danielle.”

She opens up about her sister’s cancer diagnosis, the missed opportunities for genetic counseling, and the ripple effects of discovering a BRCA mutation. Amy shares the emotional weight of learning you’re at higher risk, the confusion over what to do next, and the importance of certified genetic counselors.

With her latest film, “Love, Danielle,” she and the entire production team, cast, and crew aim to break the silence around hereditary cancer risk with honesty and humor.

Connect with Amy Byer Shainman:

• Website: lovedaniellefilm.com
• Social: @BRCAResponder
• Book: "Resurrection Lily"

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Key Questions Answered

1. What are BRCA1 and BRCA2 genes, and why do mutations in them matter?
2. Which cancers are linked to BRCA mutations for both women and men?
3. How are BRCA mutations inherited within families?
4. Does having a BRCA mutation mean you will definitely get cancer?
5. When should someone consider genetic testing for hereditary cancer risk?
6. What is the role of a certified genetic counselor in this process?
7. Are direct-to-consumer genetic tests reliable for assessing cancer risk?
8. What are the main barriers people face when considering genetic testing?
9. How can someone prepare emotionally for the possibility of life-changing test results?
10. Why was the film "Love, Danielle" made, and what conversations does it hope to spark?

Timestamped Overview

01:35 – Roxann welcomes Amy and sets the stage for a conversation about genetic risk and advocacy.

02:15 – Amy shares her personal journey: her sister’s diagnosis, frustration with missed genetic counseling, and the start of her advocacy.

03:37 – What are BRCA genes? Amy explains how these genes work and why mutations increase cancer risk.

04:50 – The conversation shifts to the specific cancers linked to BRCA mutations, for both women and men.

05:25 – Confusion about screening and testing: When should you get a mammogram? What guidelines exist for genetic testing?

06:42 – The importance of certified genetic counselors and why primary care doctors might not be enough.

08:14 – Direct-to-consumer tests versus medical-grade testing. How to find a qualified genetic counselor.

10:26 – The pitfalls of relying solely on your regular doctor for genetic risk assessment.

11:30 – Preparing for genetic testing: managing anxiety, seeking support, and understanding your choices.

13:57 – Barriers to testing: cost, access, and the hidden fears that keep people from seeking answers.

16:17 – The power of support groups like BRCA Sisterhood and the importance of safe, pr