Dorothy: [00:00:00] What does it mean when you’re high risk in the breast cancer field? Well, that means that you’re carrying genes that could put you at a greater risk of being diagnosed with breast cancer. You know, this isn’t only about family history, or if you’ve ever had problems with your breast. It’s about knowing more about your body that will make you more attuned to what you need to do to stay alive. It’s that simple. The Rose is launching a brand new genetic testing program. In October, we are identifying all the women that we serve that are at high risk. We have counseling available and we also have a whole program for you to follow if you do fall in that high risk category. Listen to Amanda Gujral today as she talks about what we need to know about our genetic makeup that could save our life.
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Let’s Talk About Your Breasts. 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.
So today we have a very special episode because we’re talking about The Rose starting genetic testing, and with us today is Amanda Gujral, who is our nurse practitioner and she’s also our, uh, manager of the Mammogram to Medical Home Program, a very special program that ensures that all of our uninsured women have a medical home. [00:02:00] So, Amanda, thank you so much for being with us today, and, uh, are you excited about this new program?
Amanda: So excited. So, I ended up going to a conference in March, and it was like a five day conference, and I learned a lot, and coming out of that conference, I realized that The Rose really should have a high risk and genetics program. So that kind of kick started me to think and brainstorm how we can do that. I think that every woman should get their risk assessment done, and if they qualify, their genetic testing done as well.
Dorothy: So, now you’ve been with The Rose, year a half, two years, and had the, the program, uh, already in progress. And you’ve seen a lot of women who’ve not had that ability to have genetic testing, really don’t know their risk, have no idea what we’re even talking about. So start us from the very beginning, because it was like, you know, I’m, I [00:03:00] know what it is sort of, but I’m afraid that’s like most people, they kind of know what it is sort of. So, how do you start it? What, what’s involved?
Amanda: So just like getting your screening mammogram and being aware of your breasts and knowing what’s going on with your breasts and knowing that they’re part of you and they’re an organ and something that you have to take care of. I think, um, as we every year we become more aware that genetics and knowing our genetics are also very important for knowing our risks in life. And so for our program with the uninsured we’ve actually been able to start screening the patients that are coming through to sort of trial the program and we’ve been able to educate the women about their risk status basically and if they qualify for the genetics. So—
Dorothy: This risk is a little different than like the other overall risk for breast cancer, or you’re a woman, so you need to be, this has a different component.
Amanda: Right, so if you’re saying that, um, so we use a tired CUSAC [00:04:00] model, which is an algorithm basically that takes your personal history, your family history, um, and then other factors potentially from your mammogram, and if you’ve had biopsies, and pushes that all together, spits out a number, and if that number is 20 percent or higher, then you’re considered a high risk, it’s a lifetime risk of breast cancer. So if you’re 20% lifetime risk of breast cancer or higher, that’s high risk. And about the average is 13% lifetime risk of breast cancer.
Dorothy: Oh, okay.
Amanda: So they’re going off of, if you’re 20%, even if you’re between 15 and 20%, depending on other factors, we might consider that high risk and also just continue you as high risk. But 20% or higher from that model is what we would consider needing increased surveillance, basically. So that would be the next step. And so knowing your risk is important because depending if you have family history or not, but based on this risk model, we need to increase your surveillance and [00:05:00] your imaging and make sure that we’re really on time with our mammograms every year, with ultrasounds, depending on your density as well of your breasts, but also adding MRIs to that.
So we can, we like to do the MRIs Six months apart from the mammogram, so that you’re being imaged every six months. And so that, that can be difficult sometimes in life, making sure you’re making an appointment every six months, but it’s important because some things we see on mammograms, some things we might see on MRI, and because you’re considered high risk, having those two modalities of imaging really helps us catch anything early if something is there.
It also allows us to have that in our mind that we know that we’re high risk so we have to do our breast exams. We have to see the doctor once or twice a year to do breast exams and just be, basically need to be hyper aware and why we’re doing this all of course, and knowing your risk statuses because, early detection. And a lot of times when you’re high [00:06:00] risk, especially if you have that family history, it could be aggressive and fast growing cancers.
Dorothy: So this is going to sound so basic. What happens during genetic testing? I mean, is it a blood test? Is it a swab of your mouth?
Amanda: Yeah, that’s a great question. So it used to be only a blood test, but now we have the mouth, uh, it’s a saliva. So it’s not swab, but you have to spit into a tube. It’s pretty easy. Um, and you can do it, you know, in five minutes at the office. So if you’re either having a, um, a significant family history, um, along with that high risk, um, you come in for a consultation appointment to talk to me, um, to discuss the high risk, if you are over 20 percent on that model, and discuss how to get appointments with us for mammogram and MRI down the line, as well as the genetic portion. So, if you have a significant family history and you qualify for genetic testing, then going off the NCCN guidelines, insurance [00:07:00] will cover it. If they don’t, the great thing is, is the, um, genetic company, Natera, will always call first to let you know what your out of pocket is before they run the test. So you can always have the option to say, no, I don’t want to run it. And then it just gets trashed. So that’s always a great option. Cause I know a lot of times you’re concerned if insurance covers it, which if we follow the guidelines, it should be, if it isn’t. It’s not like you’re going to be charged, you know, $1,000 without being asked, and usually the max is $250 that, that they would charge out of pocket, but, um.
Dorothy: Yeah, go to the uninsured, though.
Amanda: For the uninsured, we actually have a program, um, through Natera for Compassion Care. So they do have that covered, um, for, again, if they meet the guidelines to get genetic testing done.
Dorothy: So, why don’t we just tell that woman, well, you’re high risk, you’ve got this problem with your genetics, why, why is counseling important?
Amanda: So, once they do the genetic testing, um, get that swab, send it [00:08:00] out, and get the results back in about two weeks, then you get the results, right? And I’ll have the results, and then also the results get mailed to the patient. But coming back in, if they’re positive, is really important because we need to understand what’s If, you know, there’s 80 different genes, but if we test for BRCA1, BRCA2, what that means?
Depending on the gene, if you are a positive pathogenic variant for that gene, meaning that it could cause cancer, um, it’s shown to cause cancer in studies, um, then we need to know what your risk is, what we do to, for preventative care and for screenings and how we can refer you to specialists if that’s what’s needed.
I am working on getting my genetic counseling certification as well. But Natera also has genetic counselors within the program that we can talk to to confer with. And then basically we help you understand what your risk is. [00:09:00] So, BRCA1 and BRCA2 gives you 40, 60 percent chance of lifetime breast cancer. We need to understand our next steps. What’s comfortable for you, and most people that is surveillance, because studies show that doing mammograms and MRIs every six months, so once a year for each, um, will help you decrease your risk of late stage breast cancer because you can get early detection.
If you are interested in other options, if you’re positive for a pathogenic gene like that, you know, refer, helping you refer to a surgeon or oncologist to talk about prophylactic surgery, which some people decide to get. If not, um, there are also, um, hormone pills to take to decrease your risk for five years. So that’s all, there are all these options to help work with you to understand what your risk is and how to prevent the cancer, or at least early [00:10:00] detect the cancer.
Dorothy: But that sounds so, I don’t want to say confusing, but it sounds like a whole lot of information to take in.
Amanda: It is, and that’s why, I mean, we’re available all the time to check back in, especially as you’re coming back for your mammograms every year, um, things can change and your options may change as science changes, but also, um, your opinion and what you want to do for your body might change. So if you decide, well, I’m just interested in doing surveillance and I’ll stay on top of it and I’ll make my appointments and I’ll be really good about being hyper aware about my breasts, um, then, that’s a good option. But maybe some people might decide that that’s hard for them to make the appointments, or it’s hard for them to mentally think about that they have that high risk of breast cancer in their lifetime, and some people decide to do prophylactic mastectomies or, so that their risk goes down to 1%, [00:11:00] and they don’t really have to worry about it anymore. Um, it’s all very personal and individual, and that’s why we like to work with you and continue to work with you as the years go on as you’re high risk.
Dorothy: So you become their counselor on this. You become their go to person when, when they are high risk.
Amanda: Absolutely. And in our, um, like trial through the uninsured, um, patients, we have, I’ve tested about 11. And none came back with, uh, pathogenic variant. Um, which is good. One actually did come back positive, but it wasn’t for a breast cancer variant, it was for something else.
Dorothy: Oh.
Amanda: So, um, giving her the education to be aware for that condition and what kind of preventative and surveillance to do, as well as referring her to specialist.
Dorothy: Um, so that’s interesting. It might not just show breast cancer, uh—
Amanda: Right,
Dorothy: Yeah.
Amanda: If we do the full panel, depending on there are many different panels to run.
Dorothy: Okay. [00:12:00]
Amanda: So there are about 80 for the biggest panel. There are 80 mutations that we look for. So say you come in and you’ve had family history of stomach cancer, colon cancer, breast cancer, ovarian cancer, kind of like a wide range, then we might run that full panel If it’s just my mom, my grandma, and one aunt had breast cancer, uh, we just do the breast cancer genes. Um, if it’s a mix, you know, there are other GY, the gynecological, so breast and ovarian, there’s a panel for that. There’s a panel for Lynch syndrome, which is a mutation that causes breast and ovarian and, uh, stomach cancer. So, there are different panels ranging from the amount of numbers and amount of mutations that you look for. And again, that’s based on the NCC guidelines so that it’s covered by insurance.
Dorothy: My goodness, there’s a lot more to this than I ever imagined.
Amanda: Yeah.
Dorothy: Yeah. So, for that woman though, it could mean the [00:13:00] difference, hopefully it will mean the difference, in her finding that breast cancer early.
Amanda: Right.
Dorothy: Which, as we all know, early detection is the best protection against that advanced cancer. And, and as you’ve been working with so many of our uninsured women, there seems to be this, like a lull, like a lag, a gap in education. You know, I think there’s still a lot of myths out there about breast cancer and who can and cannot have it. And one of the things that I wish you would elaborate on is, you know, there’s risk factors that say you’ve got to have a mammogram. But we’re also talking risk factors for a genetic reason. So those are a little different. But it’s important to understand all of that, right?
Amanda: Right. So the risk factors, if you’re looking at as a whole as a high risk clinic, and that being high risk, um, the risk factors really include age, [00:14:00] age of your first menstrual cycle, age of your, of menopause, if you’ve hit menopause, age of your first child. Um, if you’ve taken hormones in the past, uh, if, depending on your, your breast history, your density of your breasts, if we know it, if you’ve had biopsies, um, and then family history gets included in that as well.
Dorothy: So what, what does biopsies have to do with anything?
Amanda: So it’s showing that you’re at higher risk of something going on in your breasts, right? So Having fibroadenomas, having abnormals, things that warrant a second look or even a biopsy, and that doesn’t necessarily— Like fibroadenomas, these other lumpy bumpy things in your breast don’t necessarily put you at higher risk for breast cancer but it can sometimes obscure it, make it harder to see, um, make you wait longer because you say, well, I’ve always had lumpy breasts. Like this is just a new one and kind of letting it go, [00:15:00] thinking it is a, something that’s benign. Um, And also there are types, and this gets very in the finite things, but there are types of cell changes in these lumps that can be a precursor or cause a higher risk for breast cancer, so that’s more rare, but that can also happen as well. So depending on what your biopsy says, What the cells are that are there can bump that up. That to cause it a high risk.
Dorothy: Huh. That’s, that’s, uh, something that most, most folks don’t understand.
Amanda: Right. You know? No, and I mean—
Dorothy: They had a biopsy. It’s benign. Why am why is that putting me at any kind of risk, you know? That does make sense.
Amanda: Right. So it’s, it is, it’s a lot of education and things that, yeah. I mean, outside the medical field, really, if you’re not, and if you’re not really in tune and into the breast cancer world, why would you know these things? Um, and so getting that education across, [00:16:00] understanding what risk factors are there, how the genetic and the high risk program helps, and really, um, things like, that we didn’t even know from a few, a few years ago, how MRIs are really helping to catch things that sometimes a mammogram doesn’t because no modality is perfect and nothing’s 100%. So there are things that sometimes aren’t seen on one that wasn’t seen on another. Um, and it doesn’t mean that the mammogram won’t pick that up, it just might pick it up later. So, if anybody has heard of the story of Olivia Munn, the actress who had a normal screening mammogram, and her doctor said, well, you know, you have some high risk factors, family history, let’s run your wrist score, which she did and was over 20%, and said, you know what, let’s do MRI, its a good idea just to do an extra surveillance for you, and when she did MRI, she came back that she had semi aggressive form of breast cancer that she just had a screening and [00:17:00] it didn’t show. So, you know, not to scare anyone and say like, oh, my screenings aren’t working. But if you are high risk, it is a good idea to do that extra surveillance because you might catch something there that maybe she wouldn’t have caught till the year after.
Dorothy: And that’s so true. Almost any test you have. It could, you could have to do it again, or you might have to have something else done with it, whether it’s blood or imaging or whatever, you know, there, like you said, there is no 100%, but boy, the more we know, the better our chances are of having a long and healthy life and surviving whatever.
Amanda: And it’s just like, um, like anything, you know, how we really Educate and want women to start getting their mammograms at 35 because we don’t even think 40 is really the right— Yeah, and as we go on and learn more and see more statistics, we’re learning that that’s probably the right move right and because there’s earlier breast cancer happening. Or that you know, we used to say like get your mammograms every three years and it’s not [00:18:00] annually. No, it should be annually because so much can change even within that year so as we learn and understand that these other risk factors can be pulled in, and we have these other options to see what your risk is and how to even more so, you know, you have the general population who’s at regular or like normal risk, and to even hone in on the high risk and say, well you need a little extra special attention, right? So that we can really make sure that you are followed even more closely because of your risk factors or family history.
Dorothy: So, um. And this is just a hypothetical type story. So my mother, my grandmother, aunt, all have breast cancer and they had it early. What’s the youngest a woman can be to have genetic testing?
Amanda: So for the risk assessment, basically recommend by 25 having your risk assessment done, because yeah, then we can start to get to, [00:19:00] you know, if you get towards your 30s and you’re high risk and you’ve had family with early breast cancer, 30 is very possible for breast cancer, unfortunately. So by 25, having your risk and honestly, like you can get the genetic testing done at any time. Your genes don’t change. So that mutation is going to be there from birth. Do you want to test a child? Probably not because you’re not going to do anything for testing or prevention or surveillance. But, um, by 18, I mean, 25 for sure, by that, high risk appointment that you should have, um, just because by knowing that also a child like my, you, I mean, it’s very personal if what age that child can handle knowing that information, if they are positive, um, to make life choices down the line.
But knowing by 25 can give you the foresight to know, you know, especially if the aunt or the mom, whoever had breast cancer at 35, [00:20:00] you’re probably going to want to start your surveillance at around 25 anyway. Um, so it’s good to know if you have a gene, then there are many more steps down the line to take for surveillance and possibly for risk reduction surgery or medication. So. It’s, you know, we recommend for any family member that’s close to you. So a mother or grandmother, if they’ve had breast cancer at 50, you want to start your surveillance at 40. Or if they had it at 45, you want to start 10 years before, right? So, I would go off about the same for the high risk and genetic testing.
Dorothy: So, in this program that we have, if you’re insured, more than likely it’s going to be covered by your insurance. You will know if there is any kind of copay, but if you’re uninsured and you’ve met our criteria for our, our sponsorship program, then you do not have a cost. Am I understanding that right?
Amanda: Correct. Yep. No tariff covers, um, under a compassion [00:21:00] care program.
Dorothy: Anyone can have this. I mean, it’s, there’s, and you know, for many years we were approached by different companies that wanted to do the testing, but they only wanted to do it on our insured people.
Amanda: Right.
Dorothy: So it’s a real gift that we have a company that’s willing to work with our uninsured too. Because they are most often at highest risk.
Amanda: Right. And not even aware of it. And they need that education and then they’re grateful just coming in for the mammogram and whatever other services they might need for their breasts because they’ve had a hard time finding those services to begin with.
And so to find out that they can even, you know, have this high risk counseling and have genetic testing if they, um, qualify again is great. Because I don’t think that they would have known or known their risk status, but also known a place that they’d be able to get genetic testing without insurance.
Dorothy: And so, while we always want our, our women to keep their physicians [00:22:00] informed and that you know, that they know what’s going on, this isn’t something you have to have a referral for, right?
Amanda: Nope! We, the program at The Rose, How we’re going to be able to have anybody who’s coming through for mammograms at The Rose be screened because it’s the questions that the techs ask, um, we’ll have a way either to get the questions at check in or through the techs asking, um, again, it’s mostly the questions that they ask anyway, uh, at the appointment during the mammogram.
So a little bit more in depth with family history, but other than that, um, those questions give us the Tyrer-Cuzick score. We see that Tyrer-Cuzick score, even before you leave your appointment, we can give you a card that says your score and that you’re, if you’re at high risk and next steps. And so to be able to know that walking out and then we can contact you or you can contact us to know that you can have an appointment with me to [00:23:00] discuss the high risk and next steps.
Um, and so there will even be a, uh, link on the website that if you aren’t even a patient of The Rose yet or if you haven’t been for a little while, the link will be on there to be able to fill out all that information to calculate your score and then we’ll be able to help you again if it is high.
Dorothy: Oh, interesting. So with or without coming to us one way or the other, you can find this out.
Amanda: Right. And so that would be able to, you know, us capture every woman that’s coming through and be able to see their score. And if interested, you know, learn more about what it means to be high risk and. Get the genetic testing you need.
Dorothy: So this has opened up a whole nother arena for you, personally, and of course, it’s going to be huge for The Rose because this is truly something that takes it one step more than just imaging. It is, it is truly [00:24:00] It’s the future.
Amanda: A lot of it is and that’s what I realized at the conference a lot of imaging centers have started this a program like this or have it in place and just think it’s very very important because I’m, I for one, I’m high risk and I’ve been doing surveillance a long, long time before, I’m not 40 yet, and I’ve been doing for 10 years all of the mammograms, MRIs, and genetic testing, and I just think having that knowledge and knowing what you have to do to keep yourself healthy and hopefully, you know, do your best to, we can’t prevent it, but catch breast cancer early. Um, that’s just every woman should have that ability. And—
Dorothy: Now Amanda, did you have to worry with, uh, or did you find yourself overly worrying once you knew you were really high risk?
Amanda: I mean.
Dorothy: That’s a personal question, you don’t have to answer it.
Amanda: No, I figured, you know, my mother had breast cancer young, my grandmother had breast cancer young. And so I was like, oh, my risk is probably going to be high just [00:25:00] knowing because I knew the process. Um, you know, it’s never fun to start mammograms and MRIs and imaging and like medical stuff and interventions at like 28 or whatever age I was. I, you know, you just, you have to do what you have to do for yourself.
And I believe in taking care of yourself and putting yourself first when it comes to those things. So, um, it’s always a little, you know, how anybody I think feels going into a mammogram. Like, you’re a little worried, um, you’re, you know, You don’t know what changes from year to year and you want to make sure that you’re just doing your best to do, find it early.
That’s what I learned from my family members and it was sort of talked, we talked about it very early on, which I think is important too. And that’s also another great thing about knowing your risk and knowing, getting your genetic testing done because If you are high risk or if you have had, found a gene that’s mutated in [00:26:00] yourself, then you need to tell your family.
You need to talk about it because your genes, you know, your children pass it on, but also you got it from somewhere. So you have to talk to your mother and father and you have to talk to your, you know, brothers and sisters and your children when they’re old enough.
Dorothy: Even the men?
Amanda: Even the men, yes, because the men can carry those genes and if they have one of those breast cancer genes, that’s what puts them at high risk for breast cancer too. And so even the boys, you know, if you have a son, if they have a gene that puts them at higher risk for breast cancer, it’s breast cancer, prostate cancer, obviously if we test those other ones, but then they need to know about it because they need to be aware about their breasts and their health and what they need to do.
Again, we don’t do like screening mammograms on men. But, we potentially would have them come in for breast exams and because they are at high risk. They’re also at that high risk with that gene. So even if they’re just high, high risk, if you’re high risk. Your family needs [00:27:00] to know it. Um, because having that open conversation and allowing them to be comfortable with the idea of doing these surveillance and imaging and seeing a doctor and being, you know, taking care of their health starts young.
Dorothy: And, and, and we have the ability to talk with our Spanish speaking—
Amanda: Yes.
Dorothy: Patients and everything’s the same.
Amanda: Yes. Right.
Dorothy: Insured or uninsured. This test is available right now. And, uh, anything else that I might need to know if I wanted to have this done?
Amanda: Don’t be scared. Yeah. Don’t be worried about it. I mean, it’s important. And, um, I think that, yeah, it can be a little nerve wracking hearing like, well, you’re, you know, over 20 percent and you’re high risk, but you just have to take a deep breath and say, well, it’s not like I go to my physical every year and get blood work done. Right. And that, yeah, I take my blood pressure and all of these things are to keep me healthy and keep me going and make sure that if, oh, my blood pressure is spiking, you know, you have to [00:28:00] take care of it. And that’s the same. Now you know that you’re a little high risk and you might have to add one little imaging test a year, um, and maybe make sure, you know, you’re, you’re doing your breast exams at home and that your doctor’s doing your breast exam when you see him.
But it’s very important and it’s something that women don’t always get because, the physicians that you see on a yearly basis might not always think about doing this risk assessment. They might not have time for it. They might not, it just might not come to mind. Hopefully they’re doing your breast exam, but it’s just not always forefront of mind to do this risk.
So we want to be that, that resource and those people for you to have this risk assessment done so you’re not left with not knowing or also down the line. Hopefully not, but having breast cancer and finding out after the fact that you are high risk. Now, that’s very concerning and that’s very unfortunate because things could have been done to potentially catch it earlier.
Dorothy: Thank you so much for starting this [00:29:00] program for being the driving force behind it. We’re excited. It’ll be one more way we could serve our community. And like you said, The Rose, does want to be a resource for every woman and man. And, you know, this is, this is part of how we grow and how we help each other. So thank you, Amanda.
Amanda: Thank you so much for having me.
Post-Credits: Thank you for joining us today on Let’s Talk About Your Breasts. This podcast is produced by Speke Podcasting and brought to you by The Rose. Visit therose. org to learn more about our organization, subscribe to our podcast, share episodes with friends, and join the conversation on social media using #Let’sTalkAboutYourBreasts. We welcome your feedback and suggestions. Consider supporting the Rose. Your gift can make the difference to a person in need. And remember, self care is not selfish. It’s essential.
