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Devin Sidell and Amy Byer Shainman: “You are allowed to advocate for yourself”

Devin: According to the Dana-Farber Cancer Institute, “About one in every 500 women in the United States has either a BRCA1 or BRCA2 gene mutation . . . About 50 out of 100 women who have a BRCA1 or BRCA2 mutation will develop breast cancer, and 30 out of 100 of these women will develop ovarian cancer.” Many […]

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Devin: According to the Dana-Farber Cancer Institute, “About one in every 500 women in the United States has either a BRCA1 or BRCA2 gene mutation . . . About 50 out of 100 women who have a BRCA1 or BRCA2 mutation will develop breast cancer, and 30 out of 100 of these women will develop ovarian cancer.” Many people are not aware that both women AND men can carry and pass on a BRCA gene mutation to daughters AND sons.

I watched my mom and my sister undergo chemotherapy; it was brutal for both of them and very difficult for me to witness. There are available options to reduce one’s risk of developing these BRCA-related cancers. This information needs to be out there for the world to see. My fellow producers and I hope that this movie will cause a lasting impact on the national and international community and that Lady Parts will save lives by opening a discussion about genetic counseling, genetic testing, and the current available options that are available to reduce one’s cancer risk.


As a part of our series about “Filmmakers Making A Social Impact” I had the pleasure of interviewing Devin Sidell and Amy Byer Shainman.

Devin Sidell, who went viral in this Brooklyn Nine-Nine cold open, is an actress and carrier of the BRCA1 gene mutation. Like Angelina Jolie, she opted to remove her ovaries and breasts to reduce her risk of developing breast and ovarian cancer. She is currently in pre-production — along with Executive Producer Joanna Kerns — on the dark comedy feature film Lady Parts, which shines a light on the BRCA mutation as well as on the decision-making process and repercussions of preventatively removing one’s own lady parts.

Amy Byer Shainman, also known as the BRCA Responder, is a patient advocate, author, and film producer. She educates and empowers individuals by providing support and information surrounding BRCA and other hereditary cancer syndromes. The consulting producer on Lady Parts, Shainman is a BRCA1 gene mutation carrier who removed her breasts and ovaries to reduce her risk of developing breast and ovarian cancer.


Thank you so much for doing this interview with us! Before we dive in, our readers would love to get to know you a bit. Can you share your “backstory” that brought you to this career?

Devin: Hi, readers! I’m very glad to be doing this interview. I grew up in LA and have been acting since age 5. I took some time off from it in middle school through college and then jumped right back into the game after graduating from Princeton. Most people remember me as Teen Lois on Malcolm in the Middle or as the grammar-challenged Pawnee resident in Parks & Recreation. I am BRCA1-positive and underwent a preventative oophorectomy/hysterectomy in November 2016 as well as a preventative double mastectomy in 2017. My mother survived Stage 3C ovarian cancer in 1994, while her sister (my aunt) passed away from ovarian cancer in 1996. My older sister was diagnosed with Stage 2 breast cancer in 2016.

Amy: Hi, everyone! My passion for education surrounding BRCA and hereditary cancer syndromes began in 2009. My sister, diagnosed with two separate primary cancers (ovarian cancer and uterine cancer), had several red flags for carrying a BRCA gene mutation. Although widespread clinical genetic testing for both BRCA1 and BRCA2 became available in 1996, my sister’s healthcare providers did not recommend genetic testing. I was angry, I was frustrated, and I wondered why? How thirteen years later, could health providers be so unaware? My sister attended an ovarian cancer conference in 2009 (on her own and after her diagnoses). It was then she went back to her providers and insisted on genetic counseling and underwent genetic testing. Her genetic test results showed a BRCA1 gene mutation. Subsequently, I underwent genetic counseling and testing in December of 2009. I tested positive for the same BRCA1 gene mutation as my sister. After learning more about hereditary cancer and BRCA, I knew I could not live with myself if I remained silent about this information. The information about BRCA and hereditary can save lives.

Can you share the funniest or most interesting story that occurred to you in the course of your filmmaking career?

Devin: This is the first time I’ve stepped out of the actor role and into a producing role, so I’m a bit of a newbie as a filmmaker. I’m going to let Amy handle this one.

Amy: Filming Pink & Blue: Colors of Hereditary Cancer, we had so many funny moments. It’s hard to narrow it down to one story! Alan Blassberg (the director) and I were leaving one particular shoot, and there was a residential gate that would not open. We were stuck there. There was no one around. I got out of the car, finally figured out how to get the gate open. But, it started opening toward us (not away from us). I had to hop in my car quickly and put it in reverse to avoid the gate slamming into my car! It was great comic relief to what was a very heavy shoot that day.

Who are some of the most interesting people you have interacted with? What was that like? Do you have any stories?

Devin: I absolutely adored working with Rachel Bloom on Crazy Ex-Girlfriend. She is a powerhouse! She had her hand in every facet of that show, from writing to producing to starring. I remember when we were all at a dance rehearsal for the song The Cringe, she was actively cutting measures and calling the other producers and songwriters about changing lyrics while also learning the choreography (all while wearing a bone-decorated hoop skirt, no less)!

Amy: I love Paul Osborne and Leslie Wimmer Osborne! Both of them are a fantastic combination of wacky and brilliant. Through Paul and Leslie, I met Melora Hardin and her actor husband, Gildart Jackson, who are super down-to-earth people.

What are some of the most interesting or exciting projects you are working on now?

Devin: Besides being in pre-production on Lady Parts, I recently shot a role in the pilot of B.J. Novak’s new FX anthology series Platform with Kaitlyn Dever, Lucas Hedges, and O’Shea Jackson, Jr.. I shot the majority of my scenes with George Wallace, and I fell in love with that salty, crude, grandfatherly dude. I believe the show will be coming out in 2021 depending on the COVID situation.

Amy: Lady Parts is my main “BRCA” project at the moment. I am still supporting people daily via telephone and my online support groups. I am participating in some hereditary cancer webinars too. After Lady Parts, Alan Blassberg and I will continue to work on Pink & Blue 2. On the non-BRCA front, I am an executive producer on Fluorescent Beast, a comedy, mystery which is now in post-production.

Which people in history inspire you the most? Why?

Devin: I am inspired by women who were inescapably themselves and did not bow to the pressure of what society expected them to be in their times– people like Marie Curie, Mary Shelley, and Lucille Ball. If I have one iota of the confidence they must have had, I’d be pretty darn happy.

Amy: Eleanor Roosevelt was outspoken, accomplished, and a huge supporter of women’s rights and the civil rights of African-Americans. Maya Angelou — every single word that came out of her mouth had meaning. Anyone who risks their life for another human being is inspiring to me.

Let’s now shift to the main focus of our interview, how are you using your success to bring goodness to the world? Can you share with us the meaningful or exciting social impact causes you are working on right now?

Devin: According to the Dana-Farber Cancer Institute, “About one in every 500 women in the United States has either a BRCA1 or BRCA2 gene mutation . . . About 50 out of 100 women who have a BRCA1 or BRCA2 mutation will develop breast cancer, and 30 out of 100 of these women will develop ovarian cancer.” Many people are not aware that both women AND men can carry and pass on a BRCA gene mutation to daughters AND sons.

I watched my mom and my sister undergo chemotherapy; it was brutal for both of them and very difficult for me to witness. There are available options to reduce one’s risk of developing these BRCA-related cancers. This information needs to be out there for the world to see. My fellow producers and I hope that this movie will cause a lasting impact on the national and international community and that Lady Parts will save lives by opening a discussion about genetic counseling, genetic testing, and the current available options that are available to reduce one’s cancer risk.

Many of us have ideas, dreams, and passions, but never manifest it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and take action for this cause? What was that final trigger?

Devin: I didn’t realize this until recently, but since the age of thirteen, when my mom was in the hospital with ovarian cancer, I have been living my life in fear of developing this silent, deadly disease. Without reliable ways of screening, ovarian cancer has a survival rate of only 25%. Some nights as I was going to bed, I’d say to my husband, “I could be dying from ovarian cancer right now and have no idea.” It felt heavy and scary walking around with those feelings for so many years of my life. When I woke up from my oophorectomy/hysterectomy, all I felt (besides nausea from the anesthesia, of course) was relief. I no longer had to worry about the ticking time bomb in my body. It wasn’t until I was in the recovery room after my double mastectomy surgery that I thought, “I need to do a project about this!” So little information is out there about BRCA-related cancers, especially in entertainment, and we need to normalize a topic that both men and women are facing. We see many “cancer” movies, but none show a woman being forced to make a decision about not having children in order to avoid an ovarian cancer diagnosis.

Amy: As I mentioned before, anger and frustration were the catalysts for my early advocacy efforts. Knowledge about BRCA and hereditary can save lives.

However, it’s easy to recall the exact moment that made me want to go “bigger” and maximize my actions. May 14, 2013, and an op-ed by Angelina Jolie appeared in the New York Times. In “My Medical Choice,” Jolie did in one day what would take me a lifetime to do. She put the letters B-R-C-A on the global map. In Jolie, women like myself had found a champion. I was personally inspired to say to myself, “how can I make the most impact I can make. I am not Angelina Jolie, but what can I do?” The answer was through film. The letters B-R-C-A and words “gene” and “mutation” were now out there. Still, there were no films behind the predicaments one faces when they find out they carry a cancer-causing gene mutation and don’t have cancer…well, don’t have cancer yet.

Can you tell us a story about a particular individual who was impacted or helped by your cause?

Amy: As part of my advocacy efforts, I talk to people online and via telephone. My main focus is to support them and act as a connector of the dots, getting them to the right resources. When we did public screenings for Pink & Blue, I was able to see people impacted firsthand. We would typically hold a Q & A after screening the film. People would say things like: I had no idea. Thank you for the information. Why haven’t we heard about BRCA before? I had no idea that men could get breast cancer! One particular story that stands out to me was a man in the audience whose mother had an ovarian cancer diagnosis. Through the film and the Q & A, he realized that he qualified for genetic testing as he had a first degree relative with ovarian cancer. He made an appointment with a certified genetic counselor, underwent appropriate genetic testing, and found out he carried a BRCA1 gene mutation. This man now has that information so that he may monitor his health with the proper health screenings. He has that information for his family and future generations of his family.

Are there three things that individuals, society or the government can do to support you in this effort?

Amy: Individuals can advocate for themselves. They can speak up during doctor’s appointments. If an individual feels that their genes are putting them at increased risk of developing certain cancers, voice that to their doctor. Be assertive and ask for a referral to a certified genetic counselor. Don’t let a doctor brush off your concerns or tell you not to worry, or say, “it’s not necessary.” Most primary care providers don’t have training in medical genetics. They don’t have the knowledge base to decipher if someone is at an increased risk of developing certain cancers. If someone without training in medical genetics offers to “test” you themselves…RUN! A certified genetic counselor is the most qualified person to assess cancer risk, order appropriate testing panels, and interpret genetic test results. An individual can have “negative genetic test results” and still have a family history of cancer. These are complex cases to counsel. It’s vital to have a certified genetic counselor interpret genetic test results as genetic tests are only useful if they provide meaning.

What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.

Devin:

  1. You are allowed to advocate for yourself — When I began the decision-making process about my preventative surgeries, many people asked me, “but what about kids?” I had to have the guts to realize (and say out loud) that hypothetical kids are not as important at this moment as the fact that I have a chance to save myself from a cancer diagnosis and possibly death.
  2. Enjoy the process — I spend a lot of my time focusing on the destination; I’m very goal-oriented. This is a piece of advice I’d like to follow myself!
  3. You will find your people — All of the ‘No’s you receive in the entertainment business just lead you to your “people” faster, the people who “get” you and share your sensibilities.

Amy’s going to get the last two.

Amy:

  1. Let that sh!t go! Not everyone is going to get what you do, like what you do, or like you. It doesn’t matter. Do what you feel in your heart to be right — for you’ll be criticized anyway. You’ll be damned if you do, and damned if you don’t. Eleanor Roosevelt. For example, you can’t let a less than stellar review of your work like the this one I received on my book get to you: “I had to put down the book a multitude of times…while the author is insightful to the BRCA gene and hereditary cancer, there are a few times where her ignorance shows. One such time is when she is talking about resigning to the fact she can’t have any more kids. As someone who is adopted, I found this a bit insulting. Adoption is a viable option. Just because you personally are unable to birth kids doesn’t mean you can’t have more. They just might not be genetically yours.”
  2. Learn to hit your pause button. You have to take breaks and make time for yourself. Providing emotional support for others can be draining. You have to step away and recharge.

If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?

Devin: If something has made a difference in your life, then there are other people whose lives could also be changed by that “something.” It is so worth the time to reach out and spread your knowledge!

Amy: Inevitably, you will be the one who gains something. You may start out doing for others, but you will do so much for yourself in the process.

We are very blessed that many other Social Impact Heroes read this column. Is there a person in the world, or in the US, whom you would like to collaborate with, and why? He or she might see this. 🙂

Devin: We would love to collaborate with Angelina Jolie and Christina Applegate because they were among the first celebrities to be so open about their experiences with the BRCA mutation.

Amy: Ditto, Angelina. I would also love to collaborate with Laura Dern! I admire Dern’s social activism and life philosophy of honesty, so apparent in her acting. She would be so fantastic as my sister in a film version of my book. I would also love to collaborate with Scott Foley, Kyle MacLachlan, Pierce Brosnan, Maya Rudolph, and other actors who have lost their moms to breast or ovarian cancer.

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

Devin: I am not embarrassed to admit that I am a serious lover of the Lord of the Rings films, and fittingly, my favorite quote is from Gandalf. In the dark of Moria, Gandalf says (in that beautiful Ian McKellen voice), “All we have to decide is what to do with the time that is given to us.” This moment in the film helped me through times I found myself asking the world why I had the BRCA mutation and why I was forced to make such a scary and drastic decision in order to save my own life. The reality is the reality, and I feel empowered when I realize that I can decide what to do with my time.

Amy: I lost my Dad about a year and a half ago. He always said, “The Whole World Is Nuts.” I say that out loud when there is anything that happens in life that I don’t understand. Ironically, it helps me stay optimistic. Naturally, during this pandemic, I’ve been saying it a lot!

How can our readers follow you online?

Instagram: @ladypartsthefilm / https://www.instagram.com/ladypartsthefilm

Facebook: LadyPartsTheFilm / https://www.facebook.com/LadyPartsTheFilm

Twitter: @LadyParts_film / https://twitter.com/LadyParts_film

Devin Sidell: @devinsidell (Twitter), @devin.sidell (Instagram)

Amy Byer Shainman: brcaresponder.com (@BRCAresponder on Twitter, Instagram, Facebook)

This was great, thank you so much for sharing your story and doing this with us. We wish you continued success!


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