Genetics: How a Conversation with Family Can Help Prevent Cancer

When it comes to preventing cancer, sometimes the most powerful tool is a conversation. 

In this episode of What to Know Down Below™, attorney, writer and BRCA awareness advocate Erika Stallings sits down with Estie Rose, a licensed genetic counselor at JScreen. Together, they discuss how understanding your family health history and exploring genetic testing can empower you to make informed choices about your health — and why talking openly with loved ones can be the first step toward prevention. 

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CLICK HERE to learn more about JScreen!

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Transcript

Welcome And Purpose

SPEAKER_01 0:05

Welcome to What to Know Down Below by Tina Twitch. We're here to empower you with the knowledge and tools you need to advocate for your own gynecologic health. Knowledge is power, and we encourage everyone to join us in learning more about what you need to know down below.

What Genetic Counselors Actually Do

SPEAKER_02 0:23

Hi, my name is Erica Sallings. I'm really excited to be here today with Estee Rose from JSCreen, and she'll tell you a little bit about what J-Screen is and the work that she does. But we're going to be talking about family history, genetics, and how you can use that information to empower yourself to take preventative action. I'm also really excited to talk to Estie about what exactly a genetic counselor does in debunking some of the myths and misconceptions around genetic counseling and testing. And so with that, Essie, I'm really excited to get into our conversation. So there's actually a lot to unpack there because I think for people who are not in the space, they're probably like, what is hereditary cancer? What is a genetic testing? So I think to get the conversation started, could you actually just tell me a little bit about what a genetic counselor is and the role that you play in the role that you play in the medical system?

SPEAKER_00 1:10

I love that you asked that question. Um there are a lot of assumptions, and they're not always right, um, about what genetic counselors do, so I'm happy to share it with the world. Um so genetic counselors are uh trained in genetics and also in counseling. So all genetic counselors uh complete a master's degree in genetic counseling, and we learn all about the genetic basis of disease and the hereditary basis of disease, and then we try to relay that information to other people. So when we might suspect that there could be something genetic or hereditary going on in a family or a family member, we explain to our patients why we believe that's going on, what kind of clues we might have. Then we explain what kind of testing might be appropriate to determine whether or not we're right, you know, what might be going on in the family. And then when the results come in, we break down that information in a digestible way for them and we talk about what it means for them, what it could mean for their family members. Very often there's something they can do to get ahead of that risk or to change that risk or to manage that risk. So we kind of talk them through the whole process of genetic testing and uh all that follow-up that might go along with it.

Baseline Risk Vs Hereditary Risk

SPEAKER_02 2:18

Yeah. So I want to also go back to one of the things I said in the intro, which is hereditary cancer risk. So I think for your average person, you know, if particularly like in the breast cancer space, you always hear the stat of like one in eight. But I guess I would love to sort of talk about like for an average person, what is a baseline risk of cancer? And then if you have this hereditary cancer risk or family history, what is that like?

BRCA Genes Explained

SPEAKER_00 2:40

That's a big question. So um it really depends on which cancers we're talking about. So I know today we wanted to focus more on the gynecological cancer. So um I think just to make things a little bit simpler, I think we can talk about the breast cancer risk, that one in eight that you mentioned. Um, about one in eight or 12% of women in the United States will get breast cancer, and about 2% of women will get ovarian cancer. That's the general population risk, people who don't have a genetic uh genetic mutation in their family. Um, however, some people do have genetic changes that are passed down within the family, and having those changes could predispose somebody to getting cancer and can make those risks higher than the average person. Um the cancer genetics world is um ever changing and it's constantly developing. We're learning more and more every day. Um, to make things a little bit simple, I think we could kind of focus on maybe one or two genes and use that as an example for other uh cancer genes out there. So we could focus on the BRCA1 and the BRCA2 genes just because those are the most studied genes, and we we probably know the most about those genes. Um, these genes, as well as other cancer genes, are very important in our bodies because they prevent or they help protect us from getting cancer. Now, everybody has the genes, you have them, I have them, everybody listening to the show has these genes, and we need these genes to be working well because they're providing that very important function of protecting us from cancer. However, sometimes people have changes or mutations in these genes, and when they have these changes, that causes the gene not to work so well. So again, when it's working, you're getting that protection from cancer, but when it's not working because there's a mutation, you're losing some of that protection. So anytime somebody has a mutation in any cancer gene, whether it's the BRCA gene or any other genes related to other cancers, that makes them at a higher than average risk to get cancer. So going back to your question before, we said one in eight women or 12% of women will get breast cancer. Well, if they have a BRCA1 or a BRCA2 mutation, that risk could be up to about 85%. If they have a BRCA mutation, that can also make their ovarian cancer risk up to 60%. So it's not 100%. It's not a guarantee that a woman who has any of these mutations will get these cancers, but the risk are risks are you know significantly higher than somebody who doesn't have a mutation.

SPEAKER_02 4:58

So part of the reason I'm really excited and passionate about being here with you today is I carry a BRC2 mutation, which is inherited, you know, it came from my mom, and my mom is the first person in my family who got tested. We actually believe or suspect that it comes from her father who had uh prostate prostate cancer. And I think we'll talk a little bit later in the episode about you know the fact that it can be passed on on either by by either gender. But my experience was a little bit different. You know, my mom had already had cancer twice when she finally got genetic counseling and testing. And then when I did my testing in 2014, I actually had it done by an oncologist who was certified in genetic counseling and testing. And so I think my experience is a little bit different. So I think one of the things I'd love to sort of start talking about is okay, let's let's say you know that you have a parent or a family member who has had cancer and you are thinking about genetic counseling and testing. What is that even like? Like how do you find someone? What actually happens in an appointment? Are there things you should bring?

Starting Genetic Counseling And Testing

Gathering And Sharing Family History

SPEAKER_00 6:03

Yeah, that's a really good question. So things you should bring is definitely your family history. That's the number one most important thing because knowing your family history can provide context and it can provide clues to the genetic counselor as to what might be going on in the family. Um so any way that you can share information with family members to kind of make sure that the story is complete when you're speaking to the genetic counselor could be really helpful. Um, there are actually many tools out there that exist that can help people kind of organize their family history, and you could get like other people in the family couldn't help, you know, provide different clues. You know, maybe Great Aunt Sally had this and Grandpa Ben had that. You know, it could be very helpful if everybody can contribute to the family history and it could be shared within a family. But that's the number one thing to bring is family history. Um a genetic counselor is taking a family history, we're looking for clues or we're looking for red flags in the family history. Uh so for example, sometimes we'll see a lot of people on the same side of the family with the same cancer types over and over. Or maybe we'll see people getting a cancer diagnosis at a pretty young age. Um, people of certain ethnicities are more likely to have mutations in certain cancer genes. So when we're taking the family history, we're kind of looking around to see if any of those things might apply to help give us clues as to which gene or which type of, you know, cancer types might be running in the family. Um, it is very helpful to have this, but it's not necessary to have this because really anybody can access genetic testing today. Back in the day of genetic testing, the criteria for testing used to be much stricter, and people didn't really have access to the test if they didn't meet the criteria, such as having a certain number of family members who've had cancer, etc. But nowadays the access is a lot easier and it's a lot better. So even if somebody doesn't meet criteria, there are many ways for them to access genetic testing, um, you know, kind of on the side, maybe without their without their insurance coverage. Um, for example, where I am at JSCreen, um, we make sure that there is an affordable way for people to get tested if their insurance doesn't cover it. And there are many other programs like that because we feel like anybody should get tested if that's the information that they want. You know, not they don't necessarily have to meet insurance criteria. To me personally, the criteria they need to meet is they want to know this information about themselves. Um most gynecological cancers like breast cancer and ovarian cancer are actually not genetic. Um, for ovarian cancer, for example, only about 25% are hereditary. For breast cancer, about 10% are hereditary. So very often, people who get diagnoses, a diagnosis or diagnoses of these cancers don't have a family history. So family history is a very important indicator, or you know, might suggest that there's something genetic or hereditary going on, but that's not always the case. And that's why anybody who wants the information, I think, should have access to it. Because many people who don't have a family history get a diagnosis even without it.

SPEAKER_02 8:58

Yeah. So you talked about the importance in a genetic counseling appointment of having that family history. Yeah. So I would, you know, I and I'll I'll I'll definitely share some of my own experience later, but I would, I'm just wondering, you know, I think particularly in some families, um, or for like older generations, there's a lot of shame or stigma around cancers, particularly gynecological ones, and sometimes people aren't always able to access it, or it can be hard to pull that information out. So, do you have any advice or practice pointers for people on how to maybe start having that dialogue with their family members if this is something they're interested in?

Access, Cost, And Who Should Test

SPEAKER_00 9:33

Yeah, it's not always so easy. Um, I see the same thing, and I also see a lot of like miscommunication within the family. So they might think that somebody had stomach cancer, but really it was ovarian cancer. That's a very common thing we see because you know, back in the day, the people didn't want to talk about it because it was embarrassing, or maybe they didn't have a correct diagnosis. So we don't always get an accurate family history. Um I think that it is very helpful to have a conversation with the family. I know that's not always easy. We're all, you know, all over the place and it's we're not always getting together. Um, during the holiday time, um, a lot of families will, you know, get together for Thanksgiving or for Rosh Hashanah or whatever it is, and they'll, you know, kind of always, you know, they'll have a group of people together. That's always a good time to bring it up, you know, instead of talking about how good the casserole is, you know, or what the score of the football game is, maybe bring up, you know, what is the family history? What's been going on in our family? And you'll probably learn a lot of things you didn't know, you know, by having conversations like that. Um, a friend of mine recently told me that in her family they started a Google Doc and they shared it with other people in the family. And uh people who know information in the family keep contributing to it and you know, just listing out this aunt had this cancer at this age, that uncle had that cancer at that age, and they can share it with their genetic counselor and their doctor. Um, there's also a really great app that is um associated with the CDC. It's called My Family History Portrait. Um, and they could uh people could input their own information and their family history information all in a safe and secure way. Nothing is is out there in the meta universe. Um, and they can, you know, just have it handy whenever they go to the doctor. So not being afraid to ask, you know, and making it a normal thing and normalizing family health history is really the best way to get the most information.

SPEAKER_02 11:16

Yeah. And I guess the reverse of that question, because I assume we might have some listeners who have undergone genetic counseling testing. So if you are the person who has been tested and now you have that information, do you have any advice or practice pointers on how you share that information out with family members?

SPEAKER_00 11:32

Absolutely. So part of our counseling session is always at the end, share this with your family. Um, a lot of these mutations, or actually pretty much all of them, are passed along, you know, within a family, and your information is helpful for you, but it can also be life-saving for your family members. Um, so we highly, highly encourage people to share the information. Um, we at JScreen will offer them a letter that they can forward to their family members saying, you know, hi, I've been I tested positive for this gene. Here's the mutation that I've been positive for, here are some resources for you. Um, as you decide whether or not you want to get tested, you can go to your doctor, you can get tested the same way I did, you can save the information and maybe use it a little bit later when you might be ready for it. Um, but having a letter like this and having this documentation, um, I think could be really helpful because it's not a game of broken telephone, you know, where people say something and they misunderstand it, or maybe things are just miscommunicated. So just having something in writing from a certified genetic counselor, I think is a really good way to share the information.

SPEAKER_02 12:32

So I want to transition to a couple different topics. So, you know, I remember my mom had her genetic counseling in 2007, that's when she had her second cancer diagnosis, and I didn't get my genetic counseling and test date until 2014 because I was graduating college, I was starting law school, and I remember thinking this is really important, but also if I get this information, this is really scary. Like, what do I do? Am I gonna have to do a thing? And you know, I think ultimately I ended up having a double mastectomy the same year I got my test results just because my family history, my mom had breast cancer for the first time at 28, so that was a recommendation from my doctors. So I want to spend some time sort of talking about okay, we've had like, let's say hypothetically, I've had the appointment, I've gotten the information, I got all my family health history, now I learn that I'm an individual and I carry BRC1 or BRCA2. What happens next? What are what are the things that I can do? Are there you know people that I need to talk to? What's what's the journey look like?

Life After A Positive Result

Ovarian Risk And Surgical Timing

SPEAKER_00 13:37

It's a journey. Uh it is a journey because it's a lot of information at once. Um you were probably not very surprised when you got your results. You knew that there was a 50% chance that you would be positive. Not all my patients have that, you know, have that like prep time to know that they might actually be positive. And it's it's heavy, you know, it it is a lot. You have a lot of decisions to make. The decisions don't necessarily need to be made at the moment, you know, at the time that you get the results. Sometimes they can be pushed off a little bit, and you know, you have a little bit more time to make the decision if you're getting the testing without a diagnosis. Some people only get tested once they already have a diagnosis, and at that point, things usually have to move a little bit faster with treatment and and you know other things, and we could talk about that as well. But for people who get tested without a cancer diagnosis, they they just listen, you know, and they have to hear what the options are and what makes the most sense for them. Um, specifically for a BRCA mutation and for women that I'm counseling, we talk about different options that they have for breast screening, which might include doing uh frequent and early mammograms or breast MRIs. Um, for some women, it might be doing a risk-reducing mastectomy, like you did. Um but something's gotta be done, usually like in the mid-early to mid-20s, like we gotta start doing something because of that fear of having an early cancer diagnosis, like what happened with your mom. Um when it comes to ovarian cancer, we talk about the strong recommendation to do a bilateral cell pingouporectomy, which is a surgical removal of the fallopian tubes and also the ovaries. Um, this is recommended as opposed to doing ultrasounds of the pelvis or ovaries, because it's it's now believed that there is no good screening like ultrasound for ovarian cancer. And if there's no good screening and if the symptoms of ovarian cancer are quite vague, people aren't going to find it early. And that's why many people here might have heard that ovarian cancer, when it's detected, it's usually already at a pretty late stage, and at that point it's very hard to treat. So the recommendations are a little bit stronger for ovarian cancer than they are for breast cancer, and it is recommended that all women who have a BRCA mutation do remove both their fallopian tubes and their ovaries by the time they're done having their kids or by their early to mid-40s because of that. Um, a lot of people ask me about the fallopian tubes. Uh, the reason that that is also included in the surgery is because it's believed that most ovarian cancers actually start in the fallopian tubes. So we say remove both, and then you don't have to worry as much, you know, about that risk of ovarian cancer. Um we say by the time a woman is done having kids, because the ovaries are necessary for fertility. Um, so you know, by early to mid-40s, it is recommended that all women remove the tubes and the ovaries.

unknown 16:27

Yeah.

SPEAKER_00 16:27

It's a lot. It's a lot of information. Um, it's a lot of now you have to meet with doctors and now you have to find the right people in your area who can help you throughout this whole time period. Um and I always tell people that they don't have to decide today what they're gonna do. You know, some people will say, I'll start with the screening, and maybe when I'm a little bit more established, I'll do surgery. Um, if I'm talking to a woman who's already in her 60s or 70s, that decision to remove the ovaries is not as big a deal as it is for a woman in her 20s. So um the counseling is really unique and very personalized, you know, based on who I'm talking to, um, based on the dynamics of their family, based on the financial resources they might have to do some of these things. Not everything is fully covered by insurance. Not everybody's able to take weeks and weeks off of work to have a bilateral mastectomy. You know, it's it's it's not that simple for anybody, but I'm there to kind of help them through the conversation and to send them to the right support so that they can make the right decision for themselves.

SPEAKER_02 17:24

Yeah, I I kind of I want to sort of hit one point again because I, you know, because of my own experience, I often have people reach out to me to ask me about, you know, testing or other things. And something I hear a lot from people is, oh, I don't want to get testing right now because I'm not ready to have a mastectomy, I'm not ready to have a surgery. So what are the benefits, you know, for someone who is maybe not ready to take the actions of risk-reducing surgery, could you speak a little bit about like what is, you know, what are the benefits still to like undergoing a meeting with a genetic counselor?

Intensive Screening If You Delay Surgery

SPEAKER_00 17:54

The benefits are great. You know, if you know that your risk is high, we're gonna get you on a protocol where we are being as on top of things as we possibly can. Because if you have that higher risk for breast cancer, we want to know as early as possible that it's there so we can take care of it and we can treat it as early as possible. The earlier you find something, the more treatable it's going to be. Um, so um, most women who are positive, we do recommend if they're not opting to have a risk-reducing mastectomy, that they go at least twice a year for very, very good breast screening. So it might mean doing a breast MRI at every January, for example, and every July, maybe doing a mammogram and an ultrasound. So that every six months, somebody's taking a look and they're using different types of imaging to maybe see things that one type of imaging couldn't see the last time. So every six months you're you're looking. Um, and for younger women who test positive who are not probably who are probably not already doing mammograms or MRIs, we say you got to start a lot younger than your friends might be starting, right? So typically speaking, a woman at average risk might start doing mammograms at around 40 years old. Well, if a woman is positive for one of these breast cancer genes, they're gonna start at 25, you know, and before that, they also need to be very, very on top of their own breast health, you know, doing monthly checks, going to the gynecologist every year or so, or maybe half a year, um, to do exam, you know, to do clinical exams. So we gotta just get them on a route to have people looking all the time, right? Just in case they are to find something.

Myths: Men, BRCA, And Other Cancers

SPEAKER_02 19:22

Um well, I also I want to ask you a few questions because also too, I think because people don't necessarily have a ton of familiarity with genetic counselors, you know, it's not like your dentist or like your OBJ and you see them all the time, right? Genetic counselors, I think, can can feel a little bit mysterious. So I did want to sort of talk a little bit about maybe some of the like common misconceptions or like myths around genetic counseling and testing. And so for example, something I hear a lot is oh men, you know, men don't get breast cancer, or men don't carry these genes. Is that true or not true?

SPEAKER_00 19:58

Not true. You mentioned it with your own family, right? So um, when somebody has a mutation in a cancer gene, uh there is a 50% chance for that mutation to be found in each of their first degree relatives. So your first degree relatives are your parents, your siblings, and your children. So does it make a difference if they're male or female? It's 50% for those people to have the mutation. So you assumed or you you assume that your mom got it from her father, you said.

SPEAKER_02 20:23

Right, because my yeah, my paternal grandfather passed away before he was able to do testing. So that's why we assume that's where it's from.

SPEAKER_00 20:29

Yeah, and and that makes sense. You I think you mentioned that he had prostate cancer. And even if he didn't have prostate cancer, it it could have been from him. You know, it's 50-50, it doesn't make a difference what the sex of the person is. So that is absolutely not true. It doesn't make a difference if somebody is male or female, it's 50-50. Um, when it comes to gynecological cancers and genes that are related to that, like the BRCA gene, I know I've been talking about breast cancer and ovarian cancer, but there are also other cancers associated with it. You yourself mentioned the prostate cancer. Um, men who are positive for a BRCA mutation also have an increased risk themselves. There is a chance for male breast cancer, and there's also an increased chance for prostate cancer. And men and women who are positive also have an increased risk for pancreatic cancer. So it's something that could affect men and women. Uh women have higher risks than the men do, so the conversation tends to be a little bit more serious when I'm talking to my female patients. But male patients also have screening that's recommended for them. And they might have daughters one day, or or right now, they might have daughters. So, you know, when I do a counseling session, I talk about men and women equally because even if not, you know, even if one little section of the counseling doesn't apply to you, it might apply very well might apply to other family members. So absolutely, men can have a mutation just as much as a woman kid, and it will affect them differently, but it's important for them to have the information just as much.

Retesting As Technology Advances

SPEAKER_02 21:52

Yeah. And you know, another another thing I hear, because you know, I one of the things that you kind of touched on this about the fact that access to testing is getting a lot better. And my understanding is that just the testing technology is getting better, like we're learning a lot more. And so is there any benefit for someone who maybe has been tested, you know, 10 years ago, 15 years ago, to getting tested again?

Previvors, Community, And Support

SPEAKER_00 22:13

Absolutely. So in your case, not as much because we were able to figure out what was going on in your family. But had you been tested in 2014 and they didn't find anything at that point, I probably would have counseled you saying we weren't able to find a genetic cause of the cancer in your family, but maybe come back in a few years because maybe by then we will have figured it out. So the genetics world is really, really moving at a very fast pace. And we understand a lot about the genetic basis of disease, but there's a lot more to learn. Um, so testing that was done in, let's say, 2014 was good, but now it's better, right? So maybe at that point we were testing, I don't know exactly what tests you had, but maybe they were testing for five or six. Yeah, I had a test test for myriad genetics. Yeah, yeah. Yeah, and myriad genetics has changed a lot since then. So just making up the numbers, I'm not completely sure exactly what tests you had, but maybe at that point in 2014 they were testing for five or six breast cancer genes that would have made sense, you know, for you to get tested based on your family history. Now we're testing for 48 cancer genes. So maybe you could have had a mutation that we just didn't find because we didn't look at that gene, you know. So that's why I always tell people when we really suspect that there's something going on and we weren't in the family and we weren't able to figure out what that thing was, come back in a few years because maybe the technology will have improved and maybe we will be able to identify it. The mutation is there, whether you know it or not, when it is there. So the more updated testing there is, go look for it, you know, and see if you're able to find it. Um, even if somebody is unable to find a mutation, the guidelines for breast screening could be different for them. So if somebody has a high risk for breast cancer and were unable to find a genetic mutation, we'll still recommend early mammograms and early MRIs. So it's not only your genes, and having a positive genetic test is very helpful in terms of medical management, but it's not the only thing that can help determine what makes the most sense for the person. Having a family history is enough of a reason in many cases to do early mammograms and to do them frequently. So even people with a negative result and a family history still might need guidelines for increased surveillance.

SPEAKER_02 24:21

So another another myth that I hear, or misconception I think I hear a lot when people reach out to me is oh well, like why should I get testing?

SPEAKER_00 24:29

Because you're just gonna give me this information and there's nothing I can do about it.

SPEAKER_02 24:32

So what would what would you say in response?

SPEAKER_00 24:35

You are the perfect example of there is something you can do about it. Um people are scared of knowing their genetic information. It's a very, very common. I get it, it it could be very scary information, but I and my colleagues try to make it more empowering than scary. You know, like I said before, it's there whether you know it or not, right? So it's better to know beforehand and have options to do something about it than to be reactive about things and only do something when there's already a diagnosis. Um and that seems to be what happened with you. Have you heard of the word previvor before? Have you ever used that word? Yeah. So um just for everybody listening, a previvor is somebody who has a known genetic mutation in the family but does not have a genetic uh does not have a cancer diagnosis. Um and that's, you know, we we kind of use it's a play on the word survivor, right? So it's somebody who doesn't have a cancer diagnosis but knows that their risk is high. Um, and very often the pre-vivor community is out there in the world to spread the word about how great it is for them that they know this information and that they could do something about it. And people like you are great resources like that. Why don't you tell us a little bit more about your story?

Self‑Advocacy And Using Experts

Closing Thoughts And Resources

SPEAKER_02 25:42

Yeah, um, so I've I've sort of like talked about this a little bit throughout our conversation. My mom had breast cancer for the first time in 1993, which was a couple of years before researchers knew that there were these hereditary mutations that increased your risk of breast ovarian cancer. She was only 28. So she had stayed with cancer, underwent chemo and radiation, she was in remission for about 14 years, and she got a second diagnosis of cancer my senior year of college. And because and because I was going to University of North Carolina, Chapel Hill at the time, my mom did her treatment there, which was really great because actually, like where we live is a pretty rural place in eastern North Carolina that doesn't have you know genetic genetic counselors like in a hundred and fifty mile radius. Like I've looked this up on the National Society of Genetic Counselors website before. But you know, going to a really great cancer center, like Lamborghini Cancer Center, when they saw her, you know, her own history of diagnosis, the fact that she had triple negative breast cancer the second time. That's when she got referred to her testing. So I knew since then that I had that 50% risk that you alluded to when we were talking about percentages. So I moved to New York. I um I am a lawyer, I'm no longer a firm lawyer, thank God. But at the time I was working at a firm, it was very busy. So, you know, but I finally was like, okay, I'm 29, I'm like similar in age when my mom got diagnosed. This is like a really important thing to take care of. And it was really fortunate that at NYU they have a program for young women who are dealing with family, you know, cancer, you know, family cancer, right? Whether that's hereditary or just elevated due to family history. Because, you know, as we were talking about when you're making these choices, like when you're making these choices as you know, someone in your parties, you're thinking about do I want kids, how if I'm not a partner, how do I find a partner if I know this information and what does this closely and this information look like? So I did my testing in July. July 2014. Sorry, June 2014, I had the results in July 2014. And because of my family history, the recommendation was to have using the fact that soon as possible. And you know, I think even though I knew that there was a 50% chance and I would have been like racing myself, it is still a really like I just say like crazy things like you're the one to say those words to you like out loud and to think like, oh my god, like at 29 I'm meeting with plastic surgeons and having memories and MRIs. You know. And also I was the first person in my friendship group to go through something very serious. I'm now 40. And I'm like at that age where everyone's going through something very serious, and I'm like, oh I was you guys are just catching up with that together. I just feel like a lot of you guys are like doing serious things. Yeah. Um, but that you know, but that being said, it's it is it is a really I think difficult set of choices because it's not like a 100% thing. I mean, right? It was it's a 75 to 80 percent chance of having breast cancer. It's a 25% chance of having ovarian cancer, right? And you know, I'm actually at the point right now where I'm making decisions about my ovarian cancer. You know, I technically need to have my two uh little things here. Like you know, do I do I want to take four or five weeks out to have surgery? Like these are you know hard, like super hard choices. Um but it you know, even despite all those things, it still feels very empowering because I'm like, okay, like at least I get to make a decision that you know my mom, right? Like you sort of like didn't have that element of you know being empowered. So I also feel very fortunate. I am you know there's a lot of support groups, and um, you know, I would encourage people if they are dealing with a diagnosis like this, whether they've had surgery or not, you know, there's bright pink, um, there's facing our risk for cancer empowered, yeah, there's the breesties, you know, there's a lot of places where like pre-vivers gather. All right. And so I I encourage people to look into those just because it can be a very lonely experience, yeah, in in dealing with these things. And so I think finding community is really important.

SPEAKER_00 29:49

Yeah, I see that with my patients. There's also another great organization in the Jewish community called Shar Sharet. Um they do all of like all of these. Like I I know them all. I know all the people who who work at all these places. They They dedicate their lives, you know, to helping other people that they probably didn't have this kind of support when they needed it. And um I I'm so proud to be part of this community. And I this is why I advocate for for testing before something happens, right? It's better to be proactive than it is to be reactive. It's not easy. It's not a walk in the park to go through these decisions, to go through these surgeries. You know yourself. But you meant you said it yourself, right? Your mom was not as fortunate to have these, to get to make these decisions that you get to make.

SPEAKER_02 30:27

So if there's, you know, as we sort of come to a close, you know, if for someone listening to this episode, you know, whether they're thinking about genetic counseling or testing or they know their family history, I guess what's one thing you would say for someone who, you know, wants to be like more empowered in this area?

SPEAKER_00 30:43

Advocate for yourself. You know, as I said before, not all insurance companies will cover all the testing. They tend to be very strict, they don't like to pay for things. But if you feel like you want this information and you want to know if your risk is increased, get it done. And there are ways to do it, there are resources to do it. Don't take no for an answer. You know, not all OBGYNs, not all general doctors know so much about the genetics world. It's just not their specialty. And they might say, Oh, you don't really need this test. But if you want the test, do the test. And like I said, there are many, many ways to get it done. Come to me, come to JScreen, and we'll do it for you no matter where you are in the country. Everything is done by telehealth through saliva. Um, and my part two is to use a genetic counselor throughout the process. Um, I have unfortunately seen many stories where people got tested either through a study protocol or through one of these like at-home kits and were misinformed about what their results mean and made poor decisions based on this misinformation. Um, so having a genetics expert like a genetic counselor kind of talk you through the results is very, very important. It is vital. Um, so do the test if you feel like it's the right test for you and do it in a medically appropriate and responsible way.

unknown 31:56

Yeah.

SPEAKER_02 31:57

Um, I just want to say I know you're, you know, genetic counseling is very busy, very complicated. So I'm just really grateful that you, you know, took time out of your schedule to join us today.

SPEAKER_00 32:07

And I'm grateful for you for advocating and for telling everybody your story. You know, we need more people like you. Like you said, you don't want to feel alone, you know, and there are many, many people out there who have a story to tell and don't feel comfortable doing it. So knowing that you're there to support them so meaningful.

SPEAKER_02 32:23

Yeah. Um, you know, so as we close, I just want to say to anyone who's listening, I I totally understand, having gone through this stuff myself, that talking about things like ovaries and cancer and all that stuff feels probably very awkward and very scary. But I think we're in an age where you know people share really funny TikToks or people talk about being on dating apps. So if you can do those things with your family members, maybe just like it's not that hard to take that extra step to talk about family history.

SPEAKER_00 32:53

What it comes down to is knowledge is power. I know this is so cliche, but it it really is true. The more you know, the more informed you are, the better you can make decisions for yourself.

SPEAKER_01 33:06

For more information about gynecologic health, visit Tina'swish.org slash what to know. That's Tina'swish.org slash W H A T T O K N O W. And like, follow, or subscribe wherever you listen to your favorite podcasts.