Roxann: [00:00:00] Hello everyone. I’m Roxann Hayford, Marketing Projects Coordinator at The Rose. I’m stepping in as guest host for today’s episode of Let’s Talk About Your Breasts. We’re speaking with Amy Byer Shainman, a passionate advocate and expert on genetic testing and hereditary cancer risk and award-winning author and film producer.
Our conversation dives deep into the realities of BRCA mutations, family stories and the choices that come with knowing your genetic risk. We’ll also discuss Amy’s latest film, Love Danielle, which aims to break the silence around hereditary cancer risk with honesty and humor. If this conversation resonates with you or if you know someone who might need to hear it, sharing this episode can make a real difference.
When you pass it along to your family and friends, you help us grow and you might help someone take the first step toward understanding their own risk. Please consider supporting our mission at therose.org.
Opening: Let’s Talk About Your [00:01:00] Breast, a different kind of podcast presented to you by The Rose. A breast center of excellence and a Texas treasure. You’re gonna hear frank discussions about tough topics, and you’re gonna learn why knowing about your breast could save your life.
Roxann: Thank you so much for joining us on Let’s Talk About Your Breast. We’re very excited to have you on the show, Amy.
Amy: Thank you, Roxann. I’m excited to be here.
Roxann: Yes. Yes. Well, we have a lot to talk about, so I wanna just dive right in. Um, so cancer awareness specifically around genetic testing and understanding your risk is very important to you. So I’d like for you to just share with our listeners a little bit about your journey and why you’re so passionate about speaking with women and men about this.
Amy: Well, it’s really because of what didn’t happen in my own family situation. So my sister was diagnosed with ovarian and uterine cancer back in [00:02:00] 2008 and while the doctor saved her life and she’s still alive today, there was no mention of you need to have genetic counseling and genetic testing.
They didn’t press anything upon her, and she really had the red flags for hereditary cancer. So, basically I got, I was so frustrated and became angry because what I learned was that clinical genetic testing had been around for 12 years, for BRCA one and BRCA two. Uh, so the fact that the puzzle pieces weren’t being put together really fueled my advocacy efforts, and I just couldn’t sleep at night. I, I couldn’t sleep at night. If I wasn’t connecting the dots for other people, uh, because, you know, subsequently when she tested positive, I then learned, okay, well I’m now at risk and, and [00:03:00] what does that mean for me? So, and the more I learned, the more frustrated I got that these dots weren’t being connected for people.
Roxann: Well, so for listeners who, who aren’t as familiar with the BRCA gene, can you tell us exactly what that gene is and why a mutation in that gene can be so dangerous?
Amy: So, BRCA one and BRCA two are tumor suppressing genes. We all have them and they protect you from getting cancer. But what happens is if you are born with A BRCA one or two gene mutation is that you are inherently at increased risk for developing certain cancers, and both women and men, mothers and fathers can pass on a BRCA gene mutation to daughters and sons.
Roxann: Now, what are those cancers that you mentioned you’ll be at an elevated risk for developing?
Amy: Well, so for females with BRCA: breast, ovarian, pancreatic, melanoma [00:04:00] and there is some evidence for increased risk of uterine cancer and BRCA one carriers. But those are, are the main ones.
Roxann: Knowing that that risk is there. You know, with mammography for example, ’cause that’s what we focus on, The Rose focuses on breast cancer, breast imaging. Um, so I know there can be a lot of confusion as far as, you know, when do I go get my mammogram? How often should I get my mammogram? So when it comes to genetic testing, are there specific recommendations or guidelines that are out there, and what are those based on and what are those recommendations?
Amy: If you actually have a gene mutation, when does medical management start? Okay, but that’s secondary because how do you even know when to get tested and when to go right? So I always say, you know, look, it’s really important to know your family medical history, but if you just don’t know or have a clue and don’t know where to start, the best first step is always having a conversation with a certified genetic counselor. [00:05:00] Because a certified genetic counselor is somebody who is, you know, the most qualified to assess your cancer risk, to order any genetic testing panels. I, I mean, if any, if it, if they, if it’s warrant, warranted. And, but, and almost most importantly, interpret those genetic testing results because genetic testing isn’t necessarily black and white. It’s very nuanced. What if you have a family history but you test negative for these gene mutation panels? Those are cha, that those can be challenging patients to counsel. So that’s why I always say if you really have an inkling, your genes are putting you at risk. Yes, bring it up with your primary healthcare provider.
I always say try to ask for a referral. Really do your best to press upon for a referral to a certified genetic counselor because most primary care [00:06:00] physicians and OBGYNs are not trained in medical genetics.
Roxann: Mm-hmm. Okay. That makes sense. And, and, and speaking about that, you know, can anybody, if anybody’s interested, I’m, I’m just thinking if we have a listener that says, Hey, you know, maybe that is something that I would like to do. You mentioned you’d, you know, speak with a genetic counselor or go to your doctor. So is that the first step is, is there a facility that, what I wouldn’t want for somebody to do, I guess, is, is just go online, find a facility, and just show up.
Amy: Right. Well, because not all, first of all, there are so many de direct to consumer genetic tests and not all are created equal. The labs aren’t created equal. Some are not medical grade, so that’s another reason that you wanna go to a certified genetic counselor. And also insurance reasons they know what boxes to check to get you covered the, so National Society of Genetic Counselors, nsgc.org, they’re a great resource and you can go onto their website and you can speak to one in person or by phone and [00:07:00] you can go to the little, find a genetic counselor, type in your zip code and your city and the subspecialty would be cancer, and you can find one near you. You can always bring the subject up with your primary care provider and or your OBGYN. And for men, you know, whether it’s a urologist or your primary care provider.
But as I mentioned before, those individuals aren’t necessarily trained in medical genetics, so I always say, if you have a heart problem, you wouldn’t go to a podiatrist. If you have a foot problem, you wouldn’t go to a cardiologist. So that’s why I’m a huge proponent and advocate for genetic counselors, because if you’re going to be taking a, a test that is going to then deem these next really life-changing important steps in your life, don’t you wanna make sure that it’s the right test that was ordered? That that test [00:08:00] was interpreted correctly? I mean, and that it’s a medical grade test. So those are all very, very important things.
Roxann: I was actually gonna ask you about that. You know, you, some people will walk out of there with, as you said, some life changing information, some life changing decisions that they have to make.
Um, and so if somebody is gonna take this test, how should they prepare beforehand? I understand, you know, making sure that you’re with the certified genetic counselor, but is there anything somebody can do beforehand to just relieve a little bit of that apprehension, that nervousness that they might have because they don’t know what the answer might be?
Amy: Well, you know, that’s a great question, Roxann, because so many people go through the Google Rabbit hole and they’re like, you know, what does it mean when you have this? If, if there’s a support group in your area, if there are friends that have gone through an experience before, that’s helpful. I always try to make myself available for people, you know, I run a support [00:09:00] group, uh. The largest BRCA support group for, for women on, on Facebook. And there are support re sources out there. That’s, you know, take a long walk, try not to stress out a little bit. But a certified genetic counselor will really walk you through it because it’s not just about the testing. They are a person who is going to sit down with you and help you understand what does this all mean?
And really there, if you don’t wanna get genetic testing after you’ve learned the pros and or whatever, even, I don’t know if pros and cons is the right thing to say, but the benefits. Risks, what you might learn. Do you wanna find out? You don’t have to get genetic testing. So it’s, I like to say it’s a conversation. And so that’s, that’s another thing. Just don’t stress out. I mean, you can say that to anybody about anything, but people stress out naturally.
Roxann: Well, I think that’s a good way to look at it, is it’s, it’s a conversation to really educate [00:10:00] yourself about what some of the, um, you know, ramifications might be, what you can do, what you don’t have to do, and remembering that it’s completely up to you. It’s up to your family, uh, you know, and those, you know, those loved ones that you would like to consult with as far as taking a test and then making those decisions moving forward. So you mentioned what we should look for in a testing facility, making sure that it is not just a, you know, just a, just a kind of a random place that you can go to.
You find something online because they might not be as thorough with the kind of panels that they do and, and making sure that they can interpret those results in the best way possible. For you, what are some of the challenges that you hear from women and men about not getting tested? And the reason that I ask this is because here at The Rose, of course, we deal with mammography.
And for a lot of the, the women and men that come through here, it comes down to access. There might not be a facility, um, within their county. Um, it might be cost prohibitive for them if they don’t have insurance. So are you hearing some of those same things as far as people wanting to get tested, um, and they just don’t have those [00:11:00] resources? Or, or what are you hearing with your work and, and how do you combat that?
Amy: Well, I still hear like at mammography centers, like at the point of care it isn’t being discussed. I still hear that and or people aren’t being necessarily referred out even at the point of care. I also hear it’s a big question I have is, oh, I can’t do that.
It costs too much. Everyone’s, but people are very concerned about money and cost, which is, I understand that. However, I think one thing that people need to understand is it, out of pocket medical grade genetic testing panels can be $250 now. It has come down ever since the gene patents, you know, we were overturned in 2013 in the Supreme Court decision. Uh, the cost for genetic test testing has continued to, to decrease. So, but those are things that, that I hear as barriers and I [00:12:00] try to have conversations with people and is it really those barriers or is it you’re scared? ’cause sometimes underneath people just, it’s the ignorance of not really knowing. They don’t really know what it all involves. And so I sometimes say, let’s forget the testing for a minute. Let’s just have a conversation, and that’s why I like to always talk about, you know, speaking with a certified gender counselor.
Roxann: One of the things you alluded to earlier was your BRCA responder, um, which is your support group. So do you wanna just tell us a little bit about that?
Amy: Well, BRCA responder, that’s sort of my, my name that I’ve known at, uh, as on social media. I also coadminister though a BRCA support group, uh, called BRCA Sisterhood. So, and that’s several of us, our administrators on that. So that’s just a really great resource for women. It’s actually fe, this is female [00:13:00] only. There are male counterpart groups, so if you know, if someone’s interested, I can connect them. We are secret, so you have to be able to find us in a secret way. We don’t make it easy to join because it’s really important to have that safety and as much privacy as you can within, within what is, you know, a, facebook support group.
Roxann: Oh, I understand. Mm-hmm.
Amy: Yeah.
Roxann: Well, it sounds like your advocacy, I know, of course, has led you to, to a whole lot of things. I know you, you authored a book, Resurrection Lilly. Uh, you have your film Pink and Blue, Colors of Hereditary Cancer, which brings us to our film: Love Danielle. So, um, can you give us a brief synopsis? I, I had the opportunity to see it screened here in Houston. I don’t wanna give away too much. So can you just let our, our listeners know what the film is about?
Amy: Yes, absolutely. So Danielle is the lead character playing beautifully by, uh, actress, co-writer and producer Devin Sidell and Danielle learns that she’s at [00:14:00] very high risk for developing breast and ovarian cancer. She learns she’s BRCA positive. And this happens at the same time that her sister Amy played, not me Amy, but Amy played by Jamie King in the movie, uh, is undergoing chemotherapy for a breast cancer diagnosis.
And she is basically trying now decide what to do because she feels she has ticking time bomb breasts and ovaries. And what are the decisions that she should make surrounding her cancer risk? And this, this unfolds along a huge dysfunctional family dynamic with her, uh, previously alcoholic mother who is now sober and her self-absorbed TV star father played by Barry Bostwick and the mother is played beautifully by Lesley Ann Warren. And basically Danielle, the whole story is she has to figure out how to prioritize her health and put [00:15:00] herself first, and that is pretty much the film.
Roxann: Mm-hmm. Mm-hmm. And I’m, I’m glad you mentioned the, the different family and the different personal relationships. ‘Cause that was something that was, that I really enjoyed seeing was the dynamic of those relationships. And everybody has an opinion. Everybody, you know, they, you know, they, and it’s, and it’s in, it’s, um, it’s all in love. You know, people have their opinion and their, they’re hoping, uh, you know, that she’ll make one decision one way.
So it was just interesting to see how they all interact with each other and the decisions that she, that she made. So, um, you know. You know, this isn’t a typical Hollywood film. Uh, you know, we’re talking about cancer, we’re talking about preventing cancer. It can be a very, very heavy and tough subject, uh, to cover. So was this a difficult project or script to, to sell to your casting crew?
Amy: I mean, yes and no. As you said, it was not typical Hollywood, but at the same time. Why not? Why not typical? Why, why not be at [00:16:00] Hollywood film? I’m all for changing the narrative and when I hear, no, it just makes me wanna do something more.
But in terms of selling it, not, it wasn’t difficult in that most of the cast had a connection to cancer in some way, and it was important to them to, to also tell this story and be a part of this project. What was difficult was finding the balance within the script of the humor, because we did, you know, it, it’s an absurd situation trying to figure out should you, re remove healthy body parts to avoid cancer, yet it’s a very serious subject, and. But also with the family dynamic around, we wanted it to be funny, but you don’t want it to be insensitive. So how do you make a movie about cancer that is educational, entertaining, empowering, funny, but not insensitive that it’s hitting? [00:17:00] And that was really challenging. However, I’m really happy where it landed.
Roxann: Good. And I, and I was gonna ask that about the cast and crew. Did you feel like that made people open up about their own experiences or just, you know, be interested in learning a little bit more about what genetic testing, you know, is and everything?
Amy: Yeah. I like Raymond Cruz lost his sister, he placed Stan. In that one great scene in the waiting room. And he lost his sister in real life, uh, lung cancer and. He said, he picked up my book, he read it, and you know, he’s, was very interested in the subject and thought, you know, gosh, it’s a really important subject matter. And Barry Bostwick is a prostate cancer survivor. Jamie King. I know that she lost her best friend. She said her best friend died in her arms. So everyone has been touched in some capacity, and it was really important to them to be a part of it.
Roxann: Once that conversation gets started, it can be surprising somebody else knew somebody that [00:18:00] might have had this type of cancer. So, so, uh, I’m glad to hear that everybody was, you know, was so open and, and supportive of, of everything. So now, because you had your own experience, was it difficult for you to separate your experience from what was being portrayed on the film through, um, you know, with the Danielle character?
Amy: Um, I, you know, that’s a great question, Roxann. Was it difficult? I saw it as a project and I really tried to keep my producer hat on and listen to feedback. And it’s hard because you have to put your heart in it to have it have heart, yet you have to step away and almost become emotionless to say, is this working? Is this really the next step that should be taking?
Does this visually look right? Should we include this? Should we not? So. The parts where I had to step back where I, I would [00:19:00] say, would be the parts that I personally didn’t necessarily deal with, and that would be, I already had kids when I had found out about my BRCA mutation, Devin did not. So that right there was different.
So, and this was Danielle’s story and based, loosely based on, you know, Devin’s experience. So that was a different scenario. However, I also know that what are the barriers? Why someone wouldn’t choose to have children? Well, it’s very expensive. Fertility treatments, IVF, all of those things. They may not necessarily want them.
They may not to want to wait in that timeframe, uh, of, you know, of risk, because Devin, she had to live with, do I wanna wait and actually get cancer? So the recommendations for BRCA one carriers is to get your ovaries, uh, in fallopian tubes removed [00:20:00] between the age of, of 35 or 40, or after childbearing is complete.
And in the movie, Danielle’s aunt had ovarian cancer and died at age 43. And in real life, you know, Devin had to decide, is she or is she not having kid kids? And this was very similar to what Danielle goes through in the, in the film. And she had lost her aunt to ovarian cancer. She was in that age group. She had seen her sister with the breast cancer diagnosis. She was scared and she didn’t wanna take that risk. And the genetic counselor said, Hey, you should probably do this sooner than later. But ultimately, Danielle decided this is the choice that I think I have to make and to save myself, and that was a choice that I didn’t have to make.
I already had kids by the time when I found out I had BRCA gene mutation. So I felt lucky that I had ated [00:21:00] or escaped a diagnosis. Up until that point, I was, you know, 40 years old, but at the same time, because I was 40 on the tail end of those guidelines to get my ovaries out. I just, you know, went full steam ahead and, and wanted to get those surgeries.
Roxann: And I wanted, you know, to just, you mentioned having to step back at different times or, you know, there were differences obviously in, in between the situation, so were there times that you did pause and say, I remember that, or I remember those feelings, or, or maybe confusion. You know, what you envision for your future. Being so different from the reality right now.
Amy: 100%. When Danielle says, I’m scared when she’s talking to her husband, pat in the bakery, that she’s scared, she’s con contemplating going through with the ovaries removal, the, you know, bilateral singal, ectomy, hysterectomy. She says, I’m scared. That I 100% related to [00:22:00] because I was on the fence with my husband and I, we did wanna possibly have a third child. And the fact of the matter was I was scared. I didn’t want, I wanted to be there for the kids that I had and I was scared that if I waited and I didn’t go and have another child that I would be diagnosed with ovarian cancer. I didn’t. I was too scared. So I really related to that part of the film when, you know, she’s just really scared thinking about her husband. And herself, you know, with a, with a child and then her getting diagnosed with ovarian cancer and or just being scared in general.
Roxann: I think that’s definitely a very you know, relatable feeling and you know, just that terror, I guess it can wash over you. And, and for some, I know it can be very paralyzing and it can cause people to not take any action. And I think sometimes by doing that though, [00:23:00] it, it can be early detection is what’s so important, right?
Amy: But you know, for ovarian cancer, however, Roxann, there are no reliable screening methods and that is why it’s so scary, and especially with BRCA one, which Danielle in the movie has, and Devin and myself have.
And our personal family history combined with that BRCA mutation, one mutation, our risk was upward, probably around 50%.
Roxann: It was already so high. Mm-hmm.
Amy: Yes. Which is really high. Comparing that to, you know, one to 2% the average population, so we’re talking about a really exceedingly high risk for ovarian cancer. Which is scary. Earlier we were talking about female risk and for, for males with BRCA, prostate cancer, male breast cancer or pancreatic cancer, melanoma. Those are things, uh, to look out for and I think it’s really important for people to know that one in 200- [00:24:00] 400 individuals worldwide carries a BRCA gene mutation and there are certain ethnic populations that have almost at 10 times greater risk.
The Ashkenazi Jewish population is one. Latina community, um, has greater risk. And the reason primarily I would say we really wanted to do love, Danielle, is that there have been other BRCA storylines, other great shows like, uh, the Bold Type Dead to me. I know BRCA has been mentioned on Grey’s Anatomy and they’ve, which I always appreciate any storyline that has the subject in there.
I think what we wanted to do is obviously make a whole movie around it because we wanted the attention on it. And because we feel that there have not been enough storylines about it and minimal conversation on [00:25:00] TV and film about it. So we really wanted to get the information education awareness out there. So it has a trickle down effect when people watch it and they really get that knowledge ingrained in them.
Roxann: Well, you mentioned children, you have two children now. So have they seen this film? Do they understand the choices that you made and why you made them?
Amy: Well, they’re adult children. They’re in their twenties. So yes, they’ve known my advocacy for a long time. They were five and eight when I actually underwent my own preventative surgeries and they’ve seen what I do. And when they were younger they’d be like, are you doing that breast cancer stuff again? I’m like, yes. I’m am. And I actually, my daughter is an artist and she contributed to the film. She actually did some of the artwork that was in the film.
Roxann: Oh.
Amy: And they, she has seen bits and pieces. She has not seen it all the way through either. As my son, they’ve seen [00:26:00] bits and pieces. And my husband actually has a little, uh, cameo in it too. A narration in it. He does the medical narration.
Roxann: Oh, okay.
Amy: In one of the scenes, anyone who would work for free as a producer. I, I, uh, I signed them up.
Roxann: Well, uh, hopefully they’ll get a chance to see the full film. As I mentioned, I got to see it when it was being screened here in Houston and really enjoyed watching the film. Um, so, um, just wanna know now, well actually with the film, is it gonna be released in theaters for, for, for the masses to go and watch and learn from?
Amy: Well, we do have a release plan.
Roxann: Oh good.
Amy: And that should be later in the fall.
Roxann: Okay.
Amy: So everyone needs to look out for it. And whether we are in theaters or direct to streaming is still, we’re not quite sure yet. But there is a plan and everyone can go to LoveDaniellefilm.com and check out, you know, our upcoming screenings and follow [00:27:00] where it’s gonna be and when it’s gonna be there.
Roxann: Great. Thank you so much. And so, yeah, just, I was hoping there would be more for us to keep an eye out for you because I’m sure that there’s plenty more in store for you. You’re doing such good work and definitely appreciate it. And just thank you so much for taking the time to meet with me.
Amy: Thank you.
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