OmahaNebraska.com Interview with Amy Byer Shainman- Executive Producer, “Love, Danielle”
Please tell me a little bit of what you did before now and …
And how I got involved. Once I got angry and frustrated about what didn’t happen with my sister, it fueled something in me where I couldn’t go to sleep at night, or live with myself, if I didn’t start speaking up and sharing because I felt like I had these gold nuggets of life saving information that no one knew about.
How can people not know? How can people not know this? This is available and I didn’t know about this. And I consider myself a college educated woman.
The genetic testing has been around for 12 years and her top notch, her world renown physicians weren’t even bringing this up. They were worried really about the acute care and saving her life, which we appreciated, but the other puzzle pieces weren’t being put together. [They didn’t consider] what it meant for her because she was then still at risk for breast cancer.
…
It’s very important if you’re a BRCA gene mutation carrier, or any other gene mutation carrier, to have a manager. I have a high risk oncologist who manages me and makes sure I get my blood work done. I get monitored for CA 125 and CA 19-9, which is pancreatic.
I should make sure I’m going for my colonoscopies.
In EUS, they do a clinical breast exam still on me. Even though I’ve had a mastectomy and reconstruction, I still get a clinical breast exam every six months because things can pop up. It takes one piece of breast tissue that was left somewhere. You have breast tissue all the way back here (indicates side of torso).
It’s very important to advocate and have a manager, who is monitoring your whole being.
I literally have a medical binder I bring with me to appointments.
I underwent preventative surgery in 2010. I had my ovaries, a full hysterectomy, a total hysterectomy, everything out. Later that year, I had a prophylactic bilateral mastectomy with immediate breast reconstruction. I did that because my cancer risk was as high as 87% in my lifetime.
Coupled with seeing what my sister went through and seeing her in the pain of ovarian cancer, knowing what the mutation meant, knowing my grandmother died when she was 33 and I was … 40 at the time. I was past the age of the guidelines where you were to have these surgeries.
I’ll infuse that here. The guidelines, the NCCN [National Comprehensive Cancer Network] guidelines are if you’re a BRCA1 carrier to have your ovaries [and] fallopian tubes out between ages 35 and 40. I was 40, so I feel like I was on the tail end of those recommendations.
I was, as we say in the film, a ticking time bomb.
I already had two kids. I was very fortunate. I felt so lucky. I had evaded a cancer diagnosis up until that point.
I’m so lucky (not to say that surgeries were easy). They weren’t. After that I had my surgeries and basically named myself a BRCA responder and became very involved in advocacy.
[I] was doing nonprofit stuff for a while, and then Angelina Jolie came out with her announcement. Do you remember that? In 2013, she came out with the announcement that she was a BRCA1 gene mutation carrier – [the] most beautiful, famous woman in the world.
And it was like, oh my gosh, we have our champion. This is amazing. And simultaneously, the Supreme Court overturned the patent on – it was May of 2013, I believe – the gene patent held by Myriad Genetics. Genes can’t be patented. It was a huge win, meaning that the cost of clinical genetic testing went down drastically because there was now competition in the marketplace.
Something that people don’t seem to notice or understand – how critical legislation and court cases are not just for having an opportunity for your business or for this or that but for life itself.
It’s really important [to know that] all genetic testing and direct consumer genetic testing are not created equal. … That’s really important. [It’s] why you go through a genetic counselor, so you’re making sure you understand who the test company is. They know the insurance companies. They know the best laboratories. They know how to interpret your results, and how to assess you.
So that’s why I always say, go to a professional. I always say, you don’t go to a podiatrist if you have a heart condition, vice versa. You don’t go to a cardiologist if your foot hurts.
What did you do before and how did you meet the writer and actress?
What did I do before?
I am always curious how people’s journeys towards where they are now helped them.
I was always kind of what I call creatively fickle. Always. I took film in college and songwriting and music, all of my electives. I was a communication major. I studied songwriting privately and music theory. I sew. I do crafts. I do [it] all. I have a need to be creative and also [have] a very philosophical side.
And I’m not shy. I was in theater and just gregarious. I’m sort of a gregarious loner. I’m out there, but I like my alone time.
Basically, after all of this happened and I was done with nonprofits and after Angelina Jolie came out with her information, I had my own epiphany of how I can I get this information out there on a global scale – as big of a scale as I can.
When I started going through my surgeries in 2010, that’s when I started to write my book. I started to journal and I had this idea. I’m going to journal because this stuff is important. Maybe it’ll be a book, maybe not. That process took eight years, so my book didn’t come out till 2018.
I started writing in 2010, but then I asked, how can I even go on a bigger scale? And then I was like, movies! Epiphany! My first project was called “Pink & Blue: Colors of Hereditary Cancer” (2015).
I got connected to a guy named Alan Blasberg who was working – a great director, Alan Blasberg – working on a documentary about his own experience. So, I came on. I executive produced that. That was a great experience and total documentary though.
I was hooked and got involved with a couple projects with my college roommate. My college roommate is Leslie Osborne, who’s a fantastic actress, producer, writer, [and] director. She’s amazing. She’s a quadruple threat. And she’s married to Paul Osborne, who’s another director. He’s had films play at many film festivals and I got involved in some of his films too, kind of behind the scenes.
I became hooked on this medium of film because people are very visual creatures. Wow. We can really entertain, educate, empower people through film and visual arts in a way that we can’t do it by a doctor just sitting there lecturing, going to a class and lecturing away. A documentary even, you know, more than a documentary form. I thought, wow, this is really, a really cool thing we could do, have a trickle down effect. I got involved with Devin in this project, Segue. how I got involved in this project.
…
I was very active on Twitter. It was really big and did a lot of tweet chats and educational things.
… Devin had posted something about breast cancer.
And since I’m the BRCA responder, I saw it. And I said, “Hey, by the way, I see you’re working on this project.” It wasn’t even titled at the point. It was just a project about BRCA carriers. Of course, I was like, “Oh, what is this? I would love to consult because I’m very passionate about things in the media and things, you know, in the arts and everything getting out there accurately just anywhere.” If you’re gonna do it, you know, let’s get it done right. I said, “I’d love to just consult and make sure everything’s done right.”
Simultaneously and serendipitously, my friend Paul Osborne, who I was just mentioning, was at the Phoenix Film Festival and met Devin’s co-writer. Got into a conversation with her co-writer and found out what the movie was about. And he said, “Oh, well, then you need to get Amy on board and talk to Amy, because she’s the BRCA responder.”
And so it was serendipitous. I don’t even know if you ever knew that story. And so initially I came out as a consultant, and of course, my personality is what it is, and end up executive producing the whole thing.
I’m open to feedback and I’m open to other ideas, but I definitely have strong opinions about things being good.
It’s good to listen to all those things, but it’s important to not continually pivot.
Yes.
Or pivot wrong.
Yeah.
They tell people in business to listen to their customers … but you shouldn’t do everything that they want because it might not be good.
Exactly.
So you have to find that kind of balance, and then your experiences and everything else is what’s going to make it.
Yes. This project was too important to not be a part of and not get it done right.
Where did you film it?
The pandemic threw a wrench in a lot of people’s plans with everything in life. We started filming and then had to pause and then started filming. Things weren’t working. Did some reshoots. It took a long time to do this film, so it was really five to six years.
It was a long time. The original script doesn’t even look like the finished project because went through so many different permutations. But where it landed, I’m very happy with. It’s been exhausting, but exhilarating to finally see where it’s landed.
The cast.
We’re very fortunate with a fabulous cast. We have, obviously, our lead actress, Devin Sidell, and Jaime King. Jaime King [has] been around forever. She’s fantastic in this role. It’s a must see performance. At Garden State, they were nominated. [Jaime} was nominated for Best Supporting Actress. Devin was nominated for support for Best Actress at Garden State Film Festival.
We’ve got Barry Bostwick. Barry Bostwick is fantastic. He was nominated for Best Supporting Actor for the Garden State Film Festival. People would know him from “The Rocky Horror Picture Show”.
And obviously the iconic and wonderful Leslie Ann Warren, who …going all the way back to “Cinderella” (1965). She was nominated for an Academy Award for “Victor Victoria” (1982).
So we have an amazing cast. We also have Raymond, Raymond Cruz from “Breaking Bad”. In “Breaking Bad”, he plays a really terrible, mean character, drug dealer. He plays Tuco. And this is a total departure, complete departure from that character. I love the casting in that, especially because I can say he plays a male BRCA gene mutation carrier sitting in a waiting room waiting to get a mammogram. Here he is, this tough guy, and I love the juxtaposition of that because it’s those things that change the narrative.
… and let people know that it can be anyone.
Exactly. Exactly. We got Kim Coles, Kelly Jenrette. We’ve just got a great cast and their performances are outstanding.
Do you want me to tell you the film festivals we’re going to be playing at?
Sure!
Okay, so we’re playing here at Omaha Film Festival this weekend, Sunday, March 16th.
One of our producers, Mark Stolaroff, said, “Hey, it’s a great fest. Gotta apply to submit to Omaha.” So we did. This is my first time here, and it’s awesome. We’re having this best time.
What is the pickle sandwich store right there?
Pickleman’s.
Oh, my gosh. I had my first. I’ve had my first ever Pickleman sandwich yesterday.
Shout out to you, Pickleman’s! Pickleman’s. And gave me a free cookie because it was my first time there.
So go to Pickleman’s. This is my pitch for Pickleman’s. [https://www.picklemans.com ]
What was your sandwich?
I got a number five, the turkey with the bacon. Heavenly. Heavenly. So see, you gave me the free cookie. You’re getting free PR here. It is so good. I want to go back now.
… So we premiered at the Heartland Film Festival in Indianapolis in October. We had a private screening in LA with Cancer Schmancer, which is Fran Drescher’s nonprofit organization. We’ve done a private, virtual screening with a cancer nonprofit.
What else do we have coming up? We have the Garden State Film Festival coming up, the Annapolis Film Festival coming up, the Phoenix Film Festival coming up, and a couple more coming up that I’m not allowed to announced yet.
But from there, our hope is to get distribution. You know, we’ve been talking to some distributors, but our goal would be to get the film out there by this Fall. That’s the goal. We want to do the festival circuit, but we also want people to see it already.
Is there a question you wish I would have asked?
Well, maybe talk about the misconceptions, like about men being affected and that’s important.
If you’re a BRCA gene mutation carrier it’s really important to know your health screenings and to know your health risks and know your appropriate screenings.
There are options out there to reduce your cancer risk.
It’s not just women affected. Men can carry and pass on a BRCA gene mutation to daughters and sons.
I inherited my mutation from my dad. The ramifications for men and women are different, meaning that women have a higher risk of breast cancer. But male BRCA1 and 2 gene mutation carriers do have a slightly elevated risk of male breast cancer. And that’s important for them to know. And there’s also an increased risk of pancreatic cancer, prostate cancer. These numbers are under 10%, but they’re an increased risk.
What you really are hearing about women so often is that breast and ovarian cancer, it’s a 60 to 85% risk of getting breast cancer in your lifetime if you’re a BRCA gene mutation carrier. If you’re a woman, for ovarian cancer risk, it’s anywhere from 20 to 50%. With BRCA1 carriers, it can be as high as 50% ovarian cancer risk in your lifetime. And there are no reliable screening methods for ovarian cancer.
And that’s why this information is important to know.
Because with ovarian cancer, it’s often found late when it’s in the later stage and later diagnoses. If you have upwards of a 50% chance of getting ovarian cancer, there are no screenings. This is why they’re recommending for BRCA1 carriers, NCCN, to get your ovaries out between the ages of 35 and 40.
Now, we could talk all day about surgical menopause. It’s not wonderful. These options to reduce your cancer risk for women are not great, but they are options and they can save your life. There are also other options [such as] Tamoxifen,
Thank you.
Learn more about this mutation and being diagnosed on her blog at https://thebrcaresponder.blogspot.com
Don’t forget to see her movie, 16 March at 11:45 AM at the Aksarben Cinema.
Get tickets here:
https://off25.eventive.org/films/love-danielle-67a2bb7c7bc4b36063695317
Sunday, March 16, 2025 – 11 :45 AM
Aksarben Cinema
2110 S 67th Street
Omaha, NE 68106
