Dr. Fox: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB/GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness.
Welcome to the podcast, Gila, Estie. Thank you both for coming on. I really appreciate it. We’re doing a triangled phone call between New York City, London… Is that where you are, Gila?
Gila: I’m in London.
Dr. Fox: London. And, Estie, where are you being phoned in from?
Estie: I am on Long Island.
Dr. Fox: Oh, so that’s farther than London for me, traffic wise. So, okay.
Gila: [crosstalk 00:00:44.965] accent.
Dr. Fox: Oh, you’re going to ask… Oh, with a Long Island accent? Yeah, okay.
Estie: Yeah.
Estie: I’ll try my best.
Dr. Fox: Wonderful. So, for our listeners, I obviously said something in the intro, but I’m going to let you guys introduce yourselves just so you can say who you are and the way you want it to be said. Gila, I’m going to start with you.
Gila: Okay. Hi to you both and thanks for having me. I’m excited. And this is my first phone only podcast, by the way. I’m used to looking at myself on the screen, so I’ll see if I can keep myself focused. My name is Gila Pfeffer. I am a breast cancer previvor, survivor, and prevention advocate. I recently published a memoir called “Nearly Departed: Adventures in Loss, Cancer, and Other Inconveniences,” which tells the story of when people say, “What’s the memoir about?” I say it’s about outsmarting my genetic destiny. And if they’re not that interested, that’s the end of the conversation. But if they want to know more, they say, “Well, what does that mean?” And I say, “Well, it’s about losing both my parents young to cancer and what I did to try to avoid the same fate and what happened when I got it anyway.” And then when their faces inevitably drops because that sounds sad, I do jazz hands to let them know that, “No, it’s a funny book,” and it always works. It’s a hopeful book.
And essentially my mom died at 42 of breast cancer. Her mom died at 49 and then my dad died of colon cancer at 55. So, by the time I was 30 years old, I was the oldest living member in my family. So, to say that I’ve been vigilant about breast cancer for most of my 51 years is an understatement. I always went for doctor’s checkups. I did self exams. And as soon as genetic testing became available, I think it was around 2005 to the general public, I went and had gene testing for the BRCA gene. Again, this was at a time when nobody was spinning into a tube and sending it off to find out if they’re part-Viking. This was an expensive blood test in our doctor’s office. And unsurprisingly, I found out that I was a BRCA1 mutation carrier because I’m an Ashkenazi Jewish woman with a really strong family history.
Around that same time, I learned of something called a preventative double mastectomy, which today I have now been corrected to refer to as a risk-reducing double mastectomy. And so at 34, I was a mom of four little kids. They were 1, 3, 5, and 7. I had a risk-reducing double mastectomy with reconstruction from all the fat and muscle that I had accumulated having given birth to four little kids. And it was at a time well before Angelina Jolie made it a household name. People ranged from supportive to, “Are you crazy?” And it turns out that I was not crazy because that preventative or risk-reducing surgery at the age of 34 revealed early but aggressive cancer already growing in one breast. So, I had in fact saved my own life. I went on to have eight rounds of preventative chemo. I had my ovaries out at 35. So, I was a full menopausal 35-year-old mom of four little kids. And two months later, we moved to London.
And what I do today is the book is a means to tell my story with humor and open a door to the breast cancer prevention advocacy work that I do, which happens on a one-on-one basis and a communal basis. I speak in front of audiences here in London where I am now, as well as in the U.S. and New York, where I’m also partially based. And my message is one of empowerment and agency. And I want women to not be afraid to learn the family history is to learn their genetic predispositions and know that it’s much scarier not to know what you’re facing than it is to know what you’re facing. And I know that we’ve got Estie from JScreen on here. And so our our missions are very much aligned because we’re out there banging the drum for prevention. And for me, it’s always been on my radar. But for women who hasn’t been on the radar, let’s just say by the time I get done with them, it is on their radar.
Dr. Fox: I would imagine. Thank you for that really amazing intro. Estie, who are you, my friend?
Estie: Okay, my intro is a lot shorter than Gila’s, but every single thing that Gila said, that I was cheering her on over the phone because we’re, kind of, on the same team here. You know, I’m a genetic counselor, so I counsel people about their risks to have genetic conditions such as hereditary cancer syndrome. And when people are positive, we try to empower them with this information, and we try to talk to them about what they can do with it. I and Gila also believe that it’s better to be proactive about these kinds of things, that it’s better to know before and plan for it and then to find out bad news. So, a big part of my job is being patient. But what I’m even more passionate about is educating the community about genetic conditions that could affect them and their family members so that we can get ahead of that risk.
Dr. Fox: Right, there’s so much to unpack here, but I want to start with first of all… So, Estie, you’ve been on the podcast before. You’re a returning guest. So, for our devotees who’ve been listening for years, they’ll remember you from your prior podcast here. Now, Gila, you have not been on the podcast before today, but I feel like we’ve been circling each other for this for some time because many people have said, “Why have you not had Gila on the podcast yet?” And [inaudible 00:06:31] read the book in this. So, Estie reached out. But the other person who really wanted you to be on this podcast is our mutual friend, Shari Teigman, who herself has been on the podcast.
So, it’s really just come in full circle for all of us. So, I’m really happy you guys are here, which is great. And it’s actually two things I just want to touch on because they just came to my mind as the first thing is, when you said, Gila, that it used to be called a preventative surgery, preventative mastectomy, and then you said it’s now risk-reducing, people think, “Oh, is that just nice talk versus bad talk?” But you were literally the epitome why your story is why you don’t call it preventative because it doesn’t necessarily prevent, it lowers your risk. Now, ideally, it would prevent it, obviously, and in many people, it probably does but it’s not a guarantee in that sense. And I assume that’s something that you talk about a lot with people. I know you talk about it a lot in your book and, sort of, you grapple like, “Did I make the decision too late or this? And was it early enough?” And all those things come into it because, again, it’s not like there’s one strategy that always works. It’s just about making your risk as low as possible.
Gila: That’s right. And a big part of my advocacy is I show up monthly on Instagram, which is my third home. It’s something called Feel It On The First. For over seven years now, I’ve been running a Feel It On The First campaign. And I don’t think I’ve ever missed a month. If you scroll back for seven years, you’ll see every first…or if it comes out over Shabbat or Chabad, around there, a post of me holding up two boob adjacent objects. So, it could be two lemons, two basketballs, two frying pans, two donuts for Hanukkah. I try to be season-appropriate. And the idea, exactly, is to get…
Dr. Fox: This is a winter boob.
Gila: …to get women. Right. So, for winter, I actually had to because Hanukkah and Christmas overlap. I got two Christmas wreaths and I superimposed to jelly donuts over them.
Dr. Fox: Beautiful.
Gila: Listen, I’m not going to run out of ideas, okay? As long as breast cancer exists, I’m going to come up with Feel It On The First post. But the idea behind it was that I… When you say breast cancer, everybody recoils. And there’s this reaction of it’s almost like if we don’t talk about it, I don’t have to worry about it. I don’t want that bad juju in my space. But I have to say that it’s everywhere. There’s no one I’ve encountered… I have a pink streak in my hair. So, if I’m in the airport or the supermarket, somebody will say, “Oh, I like your pink streak.” And for me, that’s catnip. I’m like, oh, now I get to convert another person…
Dr. Fox: You’re like, “Hello.”
Gila: …to my wily breast cancer prevention wig. I’m like, “Well, it’s because I’m a breast cancer prevention advocate.” And inevitably that person will well up and say, my sister, my grandmother, my mother, my friend, someone. The stats are, I think, still 1 in 8 in terms of diagnosis. And it hasn’t changed. And so it affects and impacts everyone. And in Feel It On The First, my aim is to de-stigmatize it, lighten the mood, because laughter is a great way to deliver an important message. If you can get people’s defenses down, you can get the important message in there. And the reason I know that it’s working is because over the years, I’ve come to be known as Feel It On The First lady. And women from around the world will send me photos, emails, DMs of things that, “Hey, Gila, this reminds me of you.” And it’s like their kid holding two balloons or two cereal bowls in the sink. Look, it’s Feel It On The First.
And once I get breast cancer screening and prevention to move to the forefront or the middle front of someone’s mind, I have done my job. I’ve got them thinking about it more than they did before. And you’re absolutely right. And I thought I was having a preventative mastectomy because my mom was diagnosed at 40. I was 34 and in my non-medically trained MEST calculation, I said, “Well, I’ve got years before I have to worry about encountering breast cancer myself.” But of course, that’s not the way it works. And by the same token, I speak to audiences who think that if they’re not BRCA-positive, they have nothing to worry about. And as you will both know well, genetic breast cancers only account for about 5% to 10% of cancer.
So, as a genetic counselor at one of the talks I gave back in November said, “Who has to worry about breast cancer? Women with breasts.” And I guess I would add to that certain men, too, but that’s, I guess, another subject that’s more difficult to tackle. But men can be BRCA carriers as well. And the point is that it’s not something that we should be afraid of because we have the screening tools. We have a way of getting ahead of it. And as long as you have your defense, as many lines of defense, early detection is still the best indicator for survival. So, wouldn’t you rather find breast cancer early? I mean, nobody wants to find it at all. But if you have to find it, you want to find it early. And that’s, kind of, my whole… My whole spiel is don’t ignore it. If it’s there, it’s there whether you find it or not. So, you better find it before it finds you.
Dr. Fox: And also one of the other things and, Estie, I was going to ask you, if this comes up in your conversations with people who… People have trepidation about these things for various reasons, but let’s say genetic testing. How many of them think that this means automatically I’m getting a double mastectomy, right, because it’s not what it means for most people, right? Most people, if they start doing the screening, don’t necessarily have to do a risk-reducing mastectomy. Maybe they do, maybe they don’t. But it’s not like “if A, then B” with this. Is that something that you find a lot of people are worried about that’s going to lead to them having surgery automatically?
Estie: Yeah. I mean, I’ve spoken to many people about testing, people in my own community that have a family history or they’re Ashkenazi and at risk just because of that. And they say, “I don’t want to get tested because I don’t have time to have a mastectomy right now.” Whoever has time to have a mastectomy, you know? But it’s true, right? You’re thinking ahead. You’re thinking if I’m positive, I’m going to have to do the surgery. I’m going to have to take off six weeks from work. I can’t go to Costco and do my groceries anymore. It’s annoying. Who wants to have to do that?
Gila: Women, am I right?
Estie: Exactly. And a lot of my friends and colleagues are moms and we’re very busy people. So, who wants to get a mastectomy if you don’t have to get a mastectomy? So, I think that’s where people’s minds do go. That’s just speaking from experience socially. But with my patients, I think it really depends on their age. I think that the younger women that I screen who are positive, let’s say women in their mid 20s, early 30s are not quite ready to do a big surgery like that. And they’re much more comfortable deciding to do screening. So, let’s say doing mammograms and sonograms and breast MRIs more often or at a younger age than a woman may typically do. They’re more comfortable doing that than than going for the surgery. And I’m sure Gila can tell us more about her experience with the surgery. It’s it’s a big deal. You know, it’s not an easy surgery for anybody. Even healthy people, it’s not an easy surgery. So, not what people want to do, but they, kind of, feel like they have to at some point. Maybe when their kids are a little bit older, they may be more willing to do it. But what Gila did with having such young kids, that’s brave, man. That was…
Gila: Yeah. But again, you call it brave and I get that a lot. But nobody wants to be brave, right? All the brave people who tell their brave stories would rather perhaps have had less opportunity to be brave and more opportunity to just be regular. But once life serves us those challenges, the question is, what are we going to do with them? Not everybody runs out and shouts a story from a rooftop and publishes a book about it. For me, that was a way of taking back my power and making what I went through count for something. And in terms of women being concerned about having to, as you say, have their breast tissue removed, you’re absolutely right.
First thing I encourage people to do is to find out their cancer risk profile. And that means talking to your doctor and talking to multiple doctors. And if you’re not comfortable with something you hear or you want more information about something, expand your 13. But the number one thing women have to do is speak to the doctors about their risk. And then once they’ve assessed the risk, it’s like, “Okay, what do we have to do here?” Removing my breast was the most drastic option available to me, but remember that where I was coming from is I lost my mom when I was 20. I was the oldest of five kids. My youngest sister was 3. And I watched my mother go through hell. I saw awful lesions on her body. I thought enough to know that I didn’t want any part of that.
And so my decision, my attitude toward having my breast tissue removed, once I heard that this was a possibility, was less scary and more, “Oh, my God, this is the best day of my whole entire life. When can we do this?” And that’s not to say that, when the time came, if you read the book, I write a very dramatic chapter about the slow walk into the OR and how terrified I was. And I was absolutely terrified, but I knew that it would be much more terrifying not to do that. For someone who finds out that their BRCA either was a family history or without, I think it’s a much tougher decision. And I think it but I’ve also seen it. There are a lot of women who are opting to have testing for BRCA, and other genetic testing that’s come out since the discovery of BRCA. And they’re shocked to learn that they are mutation carriers.
I came from a place of whatever you tell me to do, I’m going to do it. There is nothing so drastic that I will not do it to avoid dying in my 40s like my mom and her mom. But for other people who it wasn’t a part of their lives, it wasn’t on their radar, they thank God do have their parents and are living a whole full life, it can be terrifying. And it really is important to speak to… Again, that’s where JScreen comes in, genetic counselors. And also here in England, the NHS just finally rolled out this service where they’re encouraging anyone who’s self-reported as being Jewish. You don’t have to show any proof, but they’re starting with the Jewish community for BRCA testing because it’s a target-rich environment. They’re offering free BRCA testing. And if anyone tests positive, yeah, they’re offering… And it’s a big deal for the NHS. They’re offering follow-up preventative care, whatever that looks like.
So, I know a bunch of people who went and got tested who were young in their 30s, shocked to learn that they were BRCA-positive and are on a waiting list of probably 18 to 24 months for that surgery. That looks very different to the way I came at it, but I commend the NHS. And obviously, it’s a totally different healthcare system than in the U.S. but they’re understanding the need for it and the importance of that early intervention. So, whether I’m talking to someone here or in the U.S., I cannot stress enough that the main thing is gathering information, finding out what your options are and just keeping up with the screening.
Dr. Fox: Yeah. And I wanted to talk about your book for a second. So, again, the title alone, sort of, tells you everything about the book. You know, “Nearly Departed: Adventures in Loss, Cancer, and other Inconveniences.” And I read the book. I love the book. I mean, really obviously it’s educational.
Gila: Thank you.
Dr. Fox: It’s a very moving story. And the thing that I emailed you is like, “It’s really entertaining. It’s just funny,” which is, again, not something you would expect. It’s like a very dark and funny story. And you mentioned how that’s effective. So, I wanted to ask you specifically, did you write it in that tone because that’s just who you are and this is how you approach life or is it…? You said, “I specifically don’t want to write a story that people are just going to cry at. I want to, sort of, hit the different nerve because it’s going to be more effective,” if that question makes sense. Was it intentional for that reason?
Gila: It makes sense. I love that question. I’ve never been asked it before on the many podcasts I’ve been on.
Dr. Fox: Well, because they’re focused on the video screen and not on the phone. We concentrate here when we’re on the phone.
Gila: It’s true. They’re focused on the pink streak. And now we’re just distilling it down to our words and thoughts. Well, as our mutual friend, Shari can tell you, I’ve always been who I’ve been. And my writing voice is my speaking voice is my real life voice. And so I could not have written this book in any way other than how I’ve done it with an imagined pre-surgical intake form that, you know…
Dr. Fox: Yeah.
Gila: …has snarky, sort of, imagined answers to real intake form questions, because I Googled an intake form in order to write that part of it or an interlude called What Not to Say to People Going through Cancer Treatment that People Actually Said to Me. And it was all based on true things that were said. But again, instead of wanting to think, can you believe what that person said to me? What an idiot. I take back my power by turning it into writing art, jokes and content. If you hang out with me, this is exactly the tone you’re going to get. And I think I’ve always… You see what I’ve been through. You know, my mom died young, my dad died young. We had financial troubles. You know, I’m the granddaughter of four Holocaust survivors.
Comedy is a quintessentially Jewish response to trauma and adversity, right? You know this. And I don’t know what took me so long, but I read Victor Frankl’s “Man’s Search for Meaning.” And he talks about that. He talks about how, in the camps, a sense of humor was vital to survival. It’s important to be able to… It keeps your mind agile, but it’s also a coping mechanism. And it took me a long time. I was very careful in writing it. I worked closely with my editor to balance the humor and the heartbreaking part, right? It’s been referred to as heartbreakingly hilarious. And what you don’t want to do is make it too heavy and too sad because that will be too much for readers. What you also don’t want to do is make it so light that it sounds split like, “This girl needs therapy because she has not dealt with her issues.”
So, it was getting the balance right where it’s like joke, joke, gut punch, right? Or joke, joke. Okay, but now you’re going to do something about this. So, as long as I was doing what I had to do, which was taking care of my health, undergoing the chemo that I set out to avoid to begin with, I’m allowed to make all the jokes I want. And I encourage other people to do that, to find humor in your dark situation. You can’t really change what’s happening to you, but you can certainly enjoy some laughter if you can find it in your circumstances. So, I was not going to write this book as anything other than funny. I would rather have not written it if I can’t get a laugh out of somebody. Because as I said, laughter and humor are a great delivery system for a more important and weighty message.
Dr. Fox: Estie, do you have patients that you see who come to you for cancer screening who have read the book and you talk to them about it or is it new enough that that hasn’t happened so much yet?
Estie: Yeah, I would say the opposite. I tell them to read the book.
Dr. Fox: All right. And do you warn them? Say, hey, this is not what you’re expecting from this kind of story.
Estie: Yeah, I tell them it’s hilarious because Gila has such a beautiful way of expressing herself. You’re so great at this, Gila, like really. And I remember messaging you after I read it that I was listening to it on audio as I was preparing for Passover this year, just to make the time go faster and make it more palatable. So, thank you for that. But yeah, I mean, I tell people that if you want a different perspective on things, like not just the doom-and-gloom perspective on things, read the book. And I hope people are. I hope they’re listening.
Gila: Thank you. And it’s interesting because I’m speaking to also a medical professional. And one unexpected response I’ve had from people in the medical profession, various parts of it, they said my book showed them the patient perspective, right? You know, doctors are in the business of saving lives and curing disease or just some ailments. In your case, bringing babies into the world. And they’re not necessarily focused on or understanding what the patient experience is. And I was delighted, actually, to hear from some of these oncologists and also some OB/GYNs, a radiologist friend of mine, now she’s a friend of mine, who said, “This really gave me a good insight into what my patients might be dealing with. And I’m going to keep some of that in mind when I’m treating them and looking at it in a more holistic way.” Because I remember when I was going through… This was I guess… My surgery was in 2008. I went through chemo in 2009.
My husband, Phil, was, I think, the star of this book because he really was just about the most supportive person anybody could ever hope for in a situation like this. You know, he’s a lawyer, and he’s a data guy. And he wants to know everything about everything, whereas I just kind of wanted to know as little as possible about what I was about to be going through. And when it came to me seeing an oncologist, we’d caught it early, but it was still there. It had micrometastasized to my lymph nodes. So, again, we were catching it almost as it was happening. But all I wanted was not to have chemo. I didn’t want to have that awful treatment with the very visible side effects. And I kept trying to find ways to, “Well, I already took my breast tissue out, so I guess I don’t need chemo,” trying to get permission from someone. And he ended up tracking down… I think he’s no longer practicing, but this top breast oncologist at Sloan Kettering. He said, “I got a phone call with him. They want to present my case and see what he thought.” And this doctor was not gruff but he was quite cut and dry. He’s like, “Look, this is a boring case. She’s going to be fine. She’ll have the chemo in January, and her hair will be back by summer, right?” And that was the end of that. And my hair wasn’t back by summer or the next summer. It took a long time to grow my hair back.
So, what I learned from that interaction was that there’s more than just tackling the disease part and the prognosis part. There’s the woman-as-a-person part. And what are we actually going through? We’re people with full lives. And as you were saying, women don’t want to put their lives on hold for, say, six weeks to undergo that surgery, but this is the really real aspect of it. We think, if our world stops for six weeks, what happens? And that’s been a rewarding aspect of this is to have, in a way, brought to light something to doctors. I’m just a regular person, but I guess I had something useful to say to them.
Dr. Fox: Yeah. No, it’s always a gut punch when you hear a patient’s perspective, and it’s so different from what you think it was or what you think it typically is. And it’s all the stories. It’s so jarring when the doctor becomes a patient, you’re like, “Oh, my God, we got to fix some things on our operation side.” And it happens a lot, and I do think that that’s a benefit for people. Again, like you said, I think it’s a benefit for people who have nothing to do with any of this other than everybody knows someone with cancer, whether it’s a family member, a friend, themselves, obviously. And all the things about what not to say to somebody with cancer. Again, you do it in a really funny way but everyone’s like, “Oh, crap, I probably said that,” you know? There we go. I’m glad I learned that this way rather than maybe a harder way, like in person, in someone’s face.
Gila: Well, that was my hope. I was hoping that certain people would read it and be like, “Oops.” But I feel like whoever says those kinds of things is probably the kind of person not to recognize it when they see it in writing…
Dr. Fox: Fair.
Gila: …[crosstalk 00:27:27.277] having first to say it. I’m just going to leave it there. Someone like Estie would like because of your line of work. You would know exactly what to say and what not to say.
Estie: I would hope so, but you never know.
Gila: Yeah, but you wouldn’t. Your [inaudible 00:27:40] there because you’re facing people in sensitive situations all the time. And that’s another thing that I can advise on and blub about. I’m asked questions like, “How can I support my loved one going through cancer or crisis?” or “How can I, the person in crisis, ask for help?” And I give them advice based on my own experience. And it really boils down to just not making it about you, making it about the person who’s going through the thing. So, Estie, you very much strike me as the kind of person to do that.
Dr. Fox: Estie, what are you doing in your own practice about…? Someone comes to you and they say, “I heard this podcast, I read this book,” or some other source, “and I want to figure out what my risk is and whether I need to do anything different.” Take us through or take our listeners through what that would entail on your end if you’re meeting them and you have no information about them other than they’re interested in learning.
Estie: I am so happy when that happens. I think it’s becoming more common for people to approach us versus doctors referring them because they hear podcasts like this, and they read books like Gila’s, and they hear it out on the streets and on social media. So, I’m so happy when people self-refer to come to JScreen. It’s really important before somebody does the test, that they understand what they’re about to learn about themselves. A very big part of genetic testing, in general, is informed consent, right? So, we have them watch a video and educate themselves about what cancer genetics is, what exactly they’re going to be tested for, what kind of information they might learn about themselves, and what they might be able to do with that information in case they do learn that they’re at risk for a hereditary cancer, all the risks and benefits, the standard lingo, the standard legal things that we have to tell them. But really, we just want to make sure that they know what they might learn about themselves.
And once they listen to us and they say, “Okay, this is what I want to do,” they register for a test. We bill their insurance for the test. We send them a kit in the mail, and they just spit into it, too. It’s just a saliva test. Any genetic information that you can get from blood, you could also get from saliva when it comes to cancer genetics. So, there’s no reason for people to go to the doctor’s office and get their blood drawn anymore. They send their saliva sample back to the lab, and then the results take about two to three weeks to come in.
And when they see the results, they are also given access to a genetic counselor like myself or one of our other wonderful genetic counselors who can review what the results mean for them and also for their family members, right? So, this is a family thing. It’s not just about the individual themselves. So, we take family histories, we learn who else in the family might be at risk, and who might be a good candidate for testing, whether or not they’re positive, right? So, even if somebody tests negative, that doesn’t necessarily mean that everyone in the family is negative. So, sometimes, you see positives in some people and not in others. So, we have to identify everybody in the family who might be at risk and who might be a good candidate for testing. And then we refer them to the right people, depending on what they’re positive for.
So, at JScreen right now, we’re testing for 48 different cancer genes, including the BRCA genes that we’ve already spoken about but 46 other genes that are associated with predisposition to many different types of cancer. So, yes, we have breast cancer genes and ovarian cancer genes like the BRCA genes, but we also have genes that can impact other organs. So, we have colon cancer genes, endometrial, uterine cancer genes, melanoma genes, prostate cancer, pancreatic cancer, you name it. We’re testing for it.
And it’s important that people get referred to the right care after they test positive. So, they need to have somebody who’s going to be on top of it and make sure that they’re following the right guidelines or whatever makes the most sense for them when it comes to either cancer prevention or screening. And we’re here for them every step of the way to make a plan for themselves and for their family members.
Dr. Fox: Yeah, I don’t think a lot of people realize how much this science has advanced, and it continues to advance. You know, you said it’s not one gene anymore. There’s many, many genes that could be tested. And there’s different panels, and again, based on what you have a history of and a family history of. And again, finding out you have these genes does not automatically mean you’re having that organ removed, right? So, it really just depends on the exact nature of your risk based on your family history, based on the gene, based on what is the mutation in question, what is the organ in question, how old are you. I mean, all these things go into it. And if you’re seeing someone who knows what they’re doing, they will let you know what is, as far as they know, the best option moving forward or what all the options are moving forward. And some of them might involve removing that organ, and many of them probably don’t. And so, really, it’s meant to be individualized to the person being tested based on all the results that come in. And it’s really not cookbook like if this, you need this.
Estie: A hundred percent.
Dr. Fox: And I think that’s a really important part of this. And that’s part of why there’s a lot of counseling, and it’s very, very individualized. And, listen, a lot of people find out they don’t carry these genes. And if you have a strong family history of, let’s say, breast cancer, and all these people who had breast cancer have the BRCA gene, and you get tested and find out you don’t have the BRCA gene, that’s also a big relief, right? I mean, then you, sort of, say, “Okay, I’m probably not at the same risk.” Now exactly what that means needs to be individualized, but that can sometimes be very much not anxiety-provoking but anxiety-relieving for a lot of people in these circumstances.
Gila: Well, that’s what happened in my family actually as a result of… It’s great that I saved my own life, but I have a younger brother and three younger sisters. And the three younger sisters were very, very young when my mom died. So, they experienced her death more as the loss of a mom as opposed to a cautionary tale. Two of them were in their 20s and they all said, “Look, we’re really supportive of your decision to have this crazy surgery,” that Angelina has yet to bring into the spotlight. “We’ll help you with the kids, but that’s not something we’d ever do. Genetic testing sounds crazy. Why would anybody want to know that?” It just wasn’t on their radar on the same way.
So, in the back of my mind, I thought, “Right, I’m the older sister. I need to be setting an example.” And boy, did I set an example because when I underwent this massive procedure, six days later is when I found out that they found two early but aggressive cancers in one breast. My youngest sister was only 18 at the time, so it didn’t really register on her radar so much. But the other two who were in their 20s, both of whom were married, one had two kids and one didn’t have any kids yet, ran to get gene tested. And those two middle ones were both BRCA-positive and then they ran to my same surgeon to have risk-reducing mastectomies.
So, when I think about how to honor my parents, what can you do for your parents once they’re gone, how do you honor them? How do I keep a promise that I made to my mother on her deathbed? I said, “Mom, I’ll look out for the kids. Don’t worry.” I was 20. I didn’t know… What does that mean I’m going to look out for the kids? I’m still a kid myself. But here I was doing something that directly impacted their decision, their behavior. And thank God, their pathologies came back clean.
Years later, our youngest sister, who is now in her 30s, but I’d say probably 5 or 6 years ago, she went for gene testing and she was negative. She went for testing at a time when they were doing a lot more than just BRCA. She went for this massive panel, negative for everything. Thank God. But I like to remind her that, while that’s wonderful and amazing and good knowledge about yourself, you still have a strong family history. You have a sister, a mother and a grandmother who all had breast cancer and two other sisters who are BRCA. So, as you say, it’s individualized and it’s really about not to be cheesy, but knowledge is power. Get your knowledge and use it to take the next steps, whatever those steps are.
Dr. Fox: Amazing. Gila, what’s next for you? Are you going to write another book? Are you doing a comedy tour? What are you doing next?
Gila: [inaudible 00:35:54] the next book. I’m definitely marinating on some ideas for what the next book is. One thing I can tell you is that it will be funny, whatever it is. I’m writing other stuff on my… I have a Substack, like a newsletter called “Feelin’ It,” obviously, where I, sort of, like to write things based on observational life things that are funny but with a lesson. I’m still interacting with my community on Instagram. And I’m doing a lot of outreach to corporate and professional services and breast cancer organizations, universities, to take my Feel It On The First tour show on the road. I get in front of an audience wherever I can and I’ve been doing quite a lot of that, and that’s one of my favorite things to do. It’s really rewarding and I get to speak to people one-on-one. And inevitably after each talk, several people will come up to me and quietly share their own personal stories with me. So, that’s what’s next. And continuing to be a mom to my four kids, obviously. I should have said that first. How’s that?
Dr. Fox: No, it’s okay.
Gila: If you have an idea for a book, you email me.
Dr. Fox: We’ll talk. Wow. Estie, Gila, thank you so much for coming on the podcast. Really such an important topic, and I highly recommend your book for all our listeners. Again, it’s a great read. It’s most certainly not boring. It is very touching, but it’s also very funny. And again, it’s both a hard read and an easy read at the exact same time. And when you read it, you’ll know exactly what that means. But it is really terrific and I definitely recommend it. And, Estie, how do people find JScreen?
Estie: Just go to jscreen.org and you’ll find us.
Dr. Fox: Beautiful. All right, guys. Thank you so much.
Gila: Thank you. This was great.
Estie: Thank you, Dr. Fox.
Gila: Thank you so much.
Dr. Fox: Thank you for listening to the “Healthful Woman” podcast. To learn more about our podcast, please visit our website at www.healthfulwoman.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at hw@healthfulwoman.com. Have a great day.
The information discussed in “Healthful Woman” is intended for educational uses only. It does not replace medical care from your physician. “Healthful Woman” is meant to expand your knowledge of women’s health and does not replace ongoing care from your regular physician or gynecologist. We encourage you to speak with your doctor about specific diagnoses and treatment options for an effective treatment plan.
