Amy Byer Shainman has spent more than a decade helping people understand the life-altering implications of genetic cancer-causing mutations. Now, she has a new outlet for everything she’s learned — a candid and grimly comedic film.
“Love, Danielle,” available on streaming services, follows a fictional woman grappling with the discovery that, like 1 in 40 Ashkenazi Jews, she carries a BRCA1 gene mutation. It’s a darkly funny and intimate look at life as a cancer “previvor” — a portmanteau of “predisposition” and “survivor” used to describe someone who has not been diagnosed with cancer but has an increased risk of developing cancer due to an inherited genetic mutation or strong family history.
“Love, Danielle” is not a documentary, but it incorporates real surgical footage from its co-writer and star, Devin Sidell, who is also a previvor. Behind the camera, the film owes much of its urgency and emotional depth to its producer, Shainman, whose own journey led to more than a decade of advocacy work.
Shainman, known online as “The BRCA Responder,” grew up in a tight-knit Jewish family in the Peninsula city of Hillsborough. She moved to the Jupiter area of Florida in 1997 but maintained Bay Area ties through her family, including the sister whose 2008 cancer diagnosis led to the moment that altered the course of Shainman’s life: the discovery that she carried a BRCA1 mutation.
Their family’s cancer history stretched back decades. Their grandmother died in 1934 at just 33, a tragedy shrouded in mystery for generations. When Shainman’s sister, who requested not to be named to maintain privacy, received diagnoses of both ovarian and uterine cancer, the family finally found clarity through genetic testing. Shainman was 40 when she learned the truth.
“I was so lucky I escaped cancer up until that point and I got through my 30s without a cancer diagnosis,” she said.
Shainman explained that she was at the tail end of the recommended age range for having her ovaries and tubes removed, so she had to make her decision rather quickly. With two young children, ages 8 and 5, she had to weigh her desire for a third child against a staggering risk profile. Ultimately, she chose survival. In March 2010, she underwent a prophylactic oophorectomy (surgical removal of one or both ovaries) and hysterectomy. Six months later, she had a preventive double mastectomy and reconstruction.
During this time, Shainman’s sister was undergoing chemotherapy. She says her sister’s pain “left a mark on her as much as the genetic test.”
Her sister’s suffering and the gaps in genetic guidance they encountered propelled Shainman into action. She began helping families understand risk, speaking publicly and doing what she now calls “connecting the dots” by demystifying genetic counseling, translating medical jargon and supporting strangers through some of the scariest moments of their lives.
Some of this work took the form of storytelling. Her years of journaling became a memoir, “Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew.” She co-executive produced the documentary “Pink & Blue: Colors of Hereditary Cancer,” using film to reach people who might never set foot in a genetics clinic. And now her advocacy has expanded again through “Love, Danielle.”
The dark comedy tells the story of a woman facing a decision Shainman knows intimately, whether to remove organs preemptively in order to stave off cancer. Just like in Shainman’s real-life experience, Danielle’s sister is undergoing chemotherapy as the film begins. It’s a reminder, for the protagonist and for viewers, of what BRCA risk can mean when it is not caught early.
“It’s a humor-infused drama that allows people to take in the information without even realizing they’re being educated, they’re just being entertained,” Shainman said.
The film mirrors the emotional landscape of preventive surgery, a place where gallows humor can coexist with fear, and where a woman must decide how much of her future she’s willing to change in order to protect it.
Shainman says she sees her work as both a responsibility and an inheritance. She often speaks about the grandmother she never met, imagining her urging: “Do what I couldn’t. Go save your life.”
She still gets calls regularly from people newly diagnosed or suddenly aware of their family history. She doesn’t consider what she offers “advice.” Instead, she emphasizes clarity.
“What was right for me isn’t right for everyone,” she said. “My goal is education.”
Understanding the degree of genetic risk someone is facing starts with talking to a genetic counselor, Shainman said. She believes it’s essential to meet with someone who can help work through the big questions: What will this information mean for me? Do I even want to know it? How might it affect my family?
A genetic counselor is the provider best trained to evaluate an individual’s cancer risk, determine which tests or panels if any are appropriate, and, most important, interpret the results, Shainman said. Genetic tests are nuanced; you can have a significant family history and still show no identifiable mutation. Without proper counseling, someone might receive a negative result on a genetic test and think they’re in the clear, even if their family history indicates otherwise. Without expert guidance, they may never fully understand that they could still be at increased risk.
Shainman’s message is particularly urgent for Ashkenazi Jewish families, who face higher BRCA mutation prevalence. “Please, have the conversation,” she said. “Let a genetic counselor walk you through what it means for you.”
“Love, Danielle” is streaming on Fandango at Home, Amazon Prime Video, YouTube, Google Play Movies & TV and Apple TV. 78 minutes.
Resources from “The BRCA Responder”
Key facts about BRCA gene mutations
- About 1 in 40 individuals of Ashkenazi Jewish descent have a BRCA gene mutation, significantly increasing the risk of cancers like breast, ovarian, prostate, pancreatic and melanoma.
- Both women and men can carry and pass on a BRCA gene mutation and the child of a person with a BRCA mutation has a 50% chance of inheriting it.
Information, counseling and testing
- UCSF Hereditary Cancer Clinic: Offers genetic counseling and testing.
- Basser Center for BRCA: Provides an overview of BRCA and cancer risks.
- Color.com: Offers genetic counseling and testing.
- JScreen.org: At-home BRCA1 and BRCA2 testing.
Finding a genetic counselor
To find a genetic counselor, visit the National Society of Genetic Counselors at findageneticcounselor.nsgc.org. Scroll down and select either the in-person or telehealth option, enter your state and ZIP code, and choose “cancer” under types of specialization.