From BRCA to the Big Screen: A Conversation with Amy Byer Shainman

Amy Byer Shainman is a BRCA1 carrier and a previvor advocate known as BRCAresponder, author of Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew, and a film producer behind the documentary Pink and Blue: Colors of Hereditary Cancer and the feature film Love, Danielle.

What first inspired you to become an advocate for the BRCA community?

“Anger and frustration were what first fueled my advocacy. Much of that anger came from what did not happen when my sister was diagnosed with ovarian and uterine cancer at age 48.

In 2008, my sister displayed several clear red flags for hereditary cancer and a possible BRCA mutation. She was diagnosed with ovarian cancer and uterine cancer, two separate primary cancers, and she was under the age of 50 when diagnosed. She is also of Ashkenazi Jewish descent.

About 1 in 40 individuals of Ashkenazi Jewish descent carry a BRCA mutation, compared to roughly 1 in 400 in the general population.

Yet her healthcare providers did not offer her genetic counseling or genetic testing.

The red flags were there. What we did not yet understand was how that hereditary risk had quietly moved through our family history.

Although her providers saved her life, they failed to piece together all the important information. Clinical BRCA testing had already been available for 12 years at that point, which made me incredibly angry. I didn't understand why her providers were not connecting the dots on the genetic component, and this anger fueled my advocacy efforts.

Eventually, my sister underwent genetic counseling and testing, which led to my genetic counseling and testing. We both learned we carried a BRCA1 gene mutation, one of the three founder mutations associated with people of Ashkenazi Jewish descent.

Individuals who have a predisposition to cancer due to a genetic mutation, family history, or another risk factor but who have not been diagnosed with cancer are called previvors. I am a previvor.

Ultimately, I chose preventative surgeries to reduce my cancer risk before ever having a cancer diagnosis. In 2010, I had a nipple-sparing, skin-sparing mastectomy with breast reconstruction, and an oophorectomy with a hysterectomy. Navigating those decisions showed me how confusing and all-consuming hereditary cancer risk can be for patients and families.

My experiences ultimately pushed me toward advocacy and education. Over time, that work grew into my advocacy platform, BRCAresponder, where I focus on education, busting myths, and connecting people with reliable resources.

Much of my advocacy work involves correcting misinformation about BRCA mutations and helping people connect with certified genetic counselors. I have spent years helping patients understand genetic testing and hereditary cancer risk so they can make informed decisions about their health.

My father, who passed the BRCA1 gene mutation on to us, was an only child and remained an unaffected carrier until his 80s. His mother, my grandmother Lillian, died at age 33 from metastatic breast cancer and possibly ovarian cancer. Uncovering her story and the hidden pieces of our family medical history later became the foundation of my book Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew.

Small families often fall through the cracks when it comes to hereditary cancer risk. When a mutation is passed through an unaffected male carrier, the pattern can be easy to miss. Family histories disappear when young relatives pass away, because of tragic events like the Holocaust, or when people view cancer as a taboo subject, leading to no communication.

Even in populations with known hereditary cancer risk, such as individuals of Ashkenazi Jewish ancestry, mutations can remain hidden in families for generations if the pattern is not recognized.”

How has your own experience with the BRCA1 mutation shaped your approach to support and education?

“Living with a BRCA mutation teaches you quickly that cancer risk is complicated and deeply personal. There is no single path that is right for everyone.

That experience shapes how I approach advocacy. My goal is not to tell people what they should do, but to help them understand their options so they can make decisions that are right for them.

I also spend time correcting common misconceptions. For example, many people believe BRCA mutations can only be inherited from the mother, when in reality they can be inherited from either parent. As I mentioned, I inherited my BRCA1 mutation from my father. All genders can carry and pass on a BRCA mutation to daughters and sons, and men can also develop breast cancer. Helping people understand these realities is a big part of my advocacy work.

If someone is hesitant, scared, or opposed to genetic testing for any reason, I’ve learned that you need to meet them where they are at. I usually say, "Let's forget about genetic testing for a minute. Are you open to a conversation? A conversation with a certified genetic counselor will help you understand what all of this means." I tell them that they can speak to a certified genetic counselor by phone or in person and that speaking to one does not mean they have to undergo any genetic testing. In the US you can find a certified genetic counselor by going to NSGC - The National Society of Genetic Counselors.”

“Most cancer stories start with a diagnosis. Love, Danielle is a story about the before stage. Before certainty. Before cancer.

Love, Danielle is a comedy/drama feature film about a happily married woman who learns she carries a BRCA1 gene mutation and must decide whether to remove her healthy breasts and ovaries to reduce her cancer risk.

What makes the story different is that Danielle does not have cancer. She is navigating inherited cancer risk and the difficult decisions that come with it.

Until now, healthcare storytelling has not significantly represented previvors. Love, Danielle is the first scripted feature film centered on a BRCA carrier navigating preventive decisions before a cancer diagnosis. It brings visibility to the previvor experience while exploring how these decisions affect relationships, identity, and family dynamics.”

What motivated you to support and help bring Devin Sidell's story to life via Love, Danielle?

“My involvement with the film actually began with a Twitter message in 2019.

I saw a post from Devin Sidell (the lead actress, co-writer, and producer) about the film and felt that sharing accurate information about hereditary cancer risk is an important part of my advocacy work, so I slid into Devin’s DMs and started a conversation.

That message led to an easy friendship. Devin and I were both BRCA1 carriers who had undergone preventative surgeries to reduce our cancer risk. As a previvor myself, Devin’s story and the decisions she faced felt deeply familiar. It is a bond and a kind of sisterhood that none of us asked to join, but it creates an immediate understanding.

When we began discussing the project, I immediately saw the opportunity to combine art and science. We wanted to tell a compelling story while making sure the medical information was accurate.

To ensure the medical information in the film was correct, I used the current National Comprehensive Cancer Network guidelines. I worked with certified genetic counselor Ellen Matloff, as well as physicians and previvors who provided feedback on the dialogue and scenes. Their input helped shape several moments in the film, including the genetic counseling and ultrasound scenes, so that the experience would feel real to people navigating hereditary cancer risk.”

What do you hope audiences, especially those impacted by hereditary cancer, take away from the film?

“I hope people living with hereditary cancer risk see themselves in Danielle's story and feel understood.

Previvors often live in the uncertainty between risk and diagnosis. Previvors can spend years navigating screening, prevention decisions, family planning, and uncertainty about the future.

The film shows the emotional reality of that experience. It includes the shock of learning you carry a gene mutation, the process of gathering information, and the deeply personal decisions that follow.

One of the most important messages in the film is that these decisions are personal. Danielle makes her choices based on her history, her family experiences, and what she feels she can live with; what is right for her.

Her decisions are not recommendations or templates for others to follow. They are simply Danielle's decisions.

For audiences unfamiliar with hereditary cancer risk, the film helps make that experience easier to understand. When you attach a person to the circumstance, people begin to understand what living with a BRCA mutation actually feels like. The film also uses humor in very real moments. It helps make a serious subject easier to digest and keeps the story entertaining, so audiences often find themselves learning about hereditary cancer risk without even realizing it.

Love, Danielle is currently available across North America on video-on-demand platforms such as Apple TV and Amazon, with international availability expected later this year.”

How do you think storytelling helps patients and previvors feel less isolated?

“Storytelling allows people to recognize their own experiences in someone else's story.

Medical information alone can feel abstract, but when people watch a character navigate the same fears, decisions, and family dynamics they face, it can be validating.

Stories also open the door to conversations that might not otherwise happen. A film like Love, Danielle can spark discussions about family history, genetic testing, and hereditary cancer risk at dinner tables, among friends, or in healthcare settings. Those conversations are often where awareness begins.”

What advice would you give someone newly learning they are BRCA+?

“First, take a breath. Learning you carry a BRCA mutation can feel overwhelming, but you do not have to make every decision immediately.

Many people describe the moment they receive their genetic test results as disorienting. You hear the words, but it can be difficult to process the information at that moment. That reaction is completely normal.

Take time to learn about your options. Speak with knowledgeable healthcare professionals, such as genetic counselors and specialists familiar with hereditary cancer risk. Seek reputable resources on hereditary cancer risk."

What advice would you give someone if they aren’t sure about their family history, or don’t know where to start?

“Even if your family medical history seems small or unclear, it is still worth having that conversation. Hereditary risk does not always show an obvious pattern.

When thinking about family history, try to look beyond the relatives you know well. Think about relatives you may never have met. Why did they die? How old were they? Is the cause of death known? Sometimes a "stomach problem" described by a distant relative was actually ovarian cancer or another cancer that was never clearly explained.

When talking with family members, ask about ages as well. How old was someone when they got sick or when they died? Early cancers can sometimes be an important clue to hereditary risk.

Write down everything you learn. Even small details about relatives and ages can help when speaking with a genetic counselor. And remember to think about both sides of your family. BRCA is an autosomal dominant condition, meaning you can inherit a BRCA mutation from either parent. Plus, there are over 50 hereditary cancer syndromes, and thousands of genetic mutations beyond BRCA. It’s not just BRCA.

A question genetic counselors often ask patients is simple: Who in your family had cancer, what type was it, and how old were they when it happened? Even partial answers can help build a clearer picture of hereditary risk.

Have conversations with family members at holidays or gatherings, and ask questions about family medical history on both sides of the family. Those conversations can uncover important information that helps people better understand their own risk.”

What other projects or initiatives are you excited about next in your advocacy work?

“I am continuing to focus on expanding conversations about hereditary cancer risk through storytelling, education, and community engagement.

Our screenings of Love, Danielle, paired with Q&A discussions, create opportunities for meaningful conversations about genetic testing, family communication, and preventative healthcare. I am really excited that Love, Danielle is screening at the Society of Gynecologic Oncology Annual Meeting in Puerto Rico on April 10th. Devin and I will be there and participate in the Q&A.

I remain committed to helping people better understand hereditary cancer so that individuals and families feel empowered to learn about their family history and seek appropriate genetic counseling.

My long-term goal is simple. I want fewer people to fall through the cracks the way my sister did. I want to empower others with knowledge about hereditary cancer so that they can make the best healthcare decisions for themselves and their family.

On the creative side of advocacy, I am adapting my book Resurrection Lily into a screenplay. I do not know how long that will take, but it will be another hereditary cancer story on screen that educates and entertains audiences. Stay tuned.”