Sep 25, 2023
One of the many decisions women often have to make when diagnosed with breast cancer is whether or not they want to test for breast cancer genetics. This episode discusses aspects affecting that decision, from cost to insurance implications, future screenings, other cancer risks, and more.
podcast, umillennial, Gen X, podcasts for women, women over 40, women over 50
cancer, breast cancer, genetic testing, BRCA 1, BRCA 2, genetic counselor, Breast Cancer Awareness month
(transcript generated through AI; may contain spelling and grammatical errors)
Regan Jones 0:00
Hey there podcast listeners. Before we jump into today's episode, I want to do a little bit of housekeeping briefly, to let you know that if you were a subscriber via email for podcast notifications, there is a good chance that you have accidentally been moved over to a mailing list that is exclusively for my new baking website. And I will tell you upfront, I am sorry about that in trying to segment lists, and yet the people who wanted to be receiving notifications about the baking website, thisbakinglife.com, and people who want to receive notifications about the podcast, ThisUnmillenniallife.com, there's a little bit of overlap there. And so what I want to ask you to do is that if you want to be sure that you are getting notifications, email notifications, anytime I release a new episode, please click the link in the show notes. It'll direct you to this unmillenniallife.com/subscribe. Or you can just put that in your browser, thisunmillenniallife.com/subscribe. I have tried to do my best to clean that list up and make sure that you are where you want to be. But there's nothing like you making sure that you're getting those notifications. So if you've not been getting email notifications from me that episodes have been releasing, please go ahead and sign up. Now let's get on with today's episode.
Regan Jones 1:16
If your skin doesn't know whether to breakout or wrinkle, if you're caught between planning the third grade class party and researching retirement plans, or if you want to work out but the idea of CrossFit makes your 40-something knees ache, you've come to the right place. Welcome to This Unmillennial Life.
Regan Jones 1:41
I'm your host, Regan Jones, and welcome to today's show. So I'm releasing this episode in the latter part of September, but we are quickly going to be in the month of October very soon. And as most of you know, October is breast cancer awareness month. But for me Breast Cancer Awareness is something that we can talk about any time of the year. And today's episode is going to not only feature my full length interview with a breast cancer geneticist as we talk about breast cancer genetics, but I'm gonna come out back at the end for the odds and ins ending and talk to you briefly about a few things that I experienced or testing that I had done a procedure that I had done when I was diagnosed with breast cancer that are so different than what my mother who we talked about briefly in this episode, because of the genetic component of this, my mother had in either of her breast cancer experiences in the mid 90s. And in the early 2000s. So the reason I point that out is because I have somewhat joked in time in talking to people that it's not your mother's breast cancer anymore, there are things that are still quite standard or haven't changed a lot in the last few years, namely some of the chemo drugs that people take for breast cancer treatment. But there are a lot of new things and new tests that are available, not only as we're going to talk about today in terms of your overall genetics, but there are things like tumor genomics and different types of lymph node biopsies. And that's the stuff that we'll talk about at the end. So I hope that you will listen to this entire episode today and take from it some very helpful and powerful information that I hope you never need to know for yourself. The likelihood is, as I have stated on this podcast before, the fact that one in eight women will be diagnosed with breast cancer means that there's a good likelihood that you will know someone at some point who is diagnosed with breast cancer and my hope would be much like I found much of this information helpful as I was going through my breast cancer journey, that you will be able to share this with them and they will as well. Okay. So briefly, let me tell you about today's guest. Today's guest is Charly Harris. She's a certified genetic counselor, and she has a little over four years of clinical cancer genetics experience. She works at the Medical University of South Carolina, and sees patients with personal and family histories of cancer. She's also an instructor of cancer genomics within the college of health professionals. I was able to connect with Charly because of the genetic counselors that we have available here in my area at the breast health center that I still go to today. Those have breast cancer genetics or they're really cancer genetic counselors. I shouldn't just say that it's breast cancer because it's not cancer genetic counselors. They come to our hospital via the program. They're at the Medical University of South Carolina. So I'm so appreciative of Charly taking the time to share this information. With all of us today, Charly, welcome to the show.
Charly Harris 4:49
Hi, Regan. It's so nice to be here. Thanks for having me.
Regan Jones 4:52
I really really appreciate the opportunity to interview you. This honestly has been another episode that I've been working on for for quite a while listeners have gotten used to me saying that there have been a lot of episodes that I've been thinking about and kind of researching and trying to find the right guest. And I'm so appreciative that you are able to talk with us today about breast cancer genetics, as listeners have heard in the lead in to this episode, as a refresher, and a reminder, you know, this is a very personal topic to me, because I was one of those people who, unfortunately took some dated information about my family, and kind of transferred that up to modern day and assumed that I did not have any breast cancer genetic risks. And had I known that I did carry this gene deletion that I have, I might have been, I don't know, maybe more inclined to do a little bit more aggressive testing, although I will acknowledge always got my mammogram. So that was, that was not something that I let go by the wayside. But I'm hopeful that what we can do today is really talking about some common myths and talk about who should consider genetic testing, what kind of information we get. So let's go ahead and jump right in. Talk to us about some of the common myths that you as a certified genetic counselor, here when it comes to breast genetics, breast cancer, genetics and genetic testing.
Charly Harris 6:15
Absolutely, we hear so many common myths that have been around for many, many years and continue to just be perpetuated by other institutions or providers. Unfortunately, the number one myth we will hear is that genetic testing is so so expensive, we have so many patients, patients who are just afraid to even schedule with us because they're worried about that cost of testing. For many years, that was 1000s of dollars, we're now at a much lower cost. Most patients paying $100 or less for that testing, most of the time appointments being relatively low cost as well. So we really want people to not be afraid of such high costs, and never even stepping foot to learn about our services and genetic testing. Another huge myth that we hear is when it comes to male relatives, unfortunately, we do have a lot of patients who still really think that if your dad's family has breast cancer that in no way is that going to come down to you. We do hear patients regularly say, Oh, my dad's doctor told him that because it's from him, he can't pass it on to me. And we do see patients who have different mutations and their dad's side of the family, and they could have been tested for many years and just didn't because of that myth that was going on. And then we see patients who do have male relatives like sons and brothers and they think in no way do I need genetic testing, I already have cancer, I don't want to share any information with female relatives, I have none. But really a lot of the genes that we can test are not only affecting women, we do see many restroom male relatives as well. So this is going to impact pretty much everyone in that family history.
Regan Jones 7:47
Yeah, that last one is a really, they're all good clarifications, and I want to comment on all of them. But that last one's really good clarification, because I know for me the gene deletion that I have puts me personally at increased risk for obviously breast cancer, but also it's associated with increased risk of prostate cancer and increased risk of colon cancer, both of which are, you know, male-oriented, just as one prostate cancer being male-oriented, and colon cancer being something that, you know, essentially knows Miss gender. I also, I would just say, I really appreciate you clarifying about the expense. Because I didn't know that myself, I knew that once I was diagnosed with breast cancer, I think I was offered within a certain period of time with my diagnosis, the testing for free, I don't think that I ended up paying anything, but I remember, at the time, my genetic counselor saying even if you decide to wait, and it really is a hefty decision for people, you know, to go ahead and decide to do genetic testing, and we'll talk about all that. But even if I had waited, I remember thinking, oh, gosh, it's really not that expensive to have it done. So I really appreciate that you clarified both of those. So, you know, looking back over the years, I do recall that I had a doctor at one point, who said to me, you know, have you considered having genetic testing done To which I responded, oh, you know, my mom has been tested and she doesn't have bracket one or bracket two. That doctor obviously identified and I wish we had talked about it a little bit more that I was a good candidate for genetic testing. Who would you say are people that should consider genetic testing for breast cancer risk
Charly Harris 9:29
for us, we will typically recommend the people who have cancer themselves being our primary candidate for genetic testing are going to be our most informative people. So the common hereditary cancers are seeing breast ovarian, pancreas, prostate, colon, but we are very aware that these people are not always available, maybe not willing and sometimes very much in the middle of some heavy treatment. So we're really recommending family members who have people who are very young in their family with cancers people who had like two with three people with the same cancers on the same side of the family, some rare cancers in their family, people who might have had relatives in the past who did genetic testing 20 years ago, and are not available to retest, and we can really look at those families again, revisit that same idea.
Regan Jones 10:18
Okay, that last one is a really good clarification, because I think what I gathered from that, and and correct me if I misunderstood this, when I had a doctor approached me about it a number of years ago, and I said, I don't know, I'm not sure that I want to go through genetic testing, it could have been that I could have gone back to my mother at that point and said, Can you be tested again, because we now know there are more genes that have been identified that are associated with breast cancer that we didn't know back when she was first tested for braca. One and braca. Two is that is that kind of what you're saying? Cuz she was, she was the person who initially was diagnosed, it was my mother, her, her mother, her sister, and her great grandmother, our her grandmother had had breast cancer. So it seems like even if I didn't want to be tested, if she she had been willing to test again, she would have been a candidate,
Charly Harris 11:12
exactly, she would have been our really most informative person, if we didn't find her answer of breast cancer and her we wouldn't need to test everybody else. If we find it in her then we are able to test other relatives and and get a better idea of who we would say is what we call a true negative. If we have a mutation and mom and family members, and our relatives are testing negative for that, that gives us the most information about risk reducing is much closer to general population risk. Whereas when we have people who can't test all their relatives with cancer, we're never going to get an answer for those people. And we can still reduce the risk a little bit. But it's not as informative as testing the people who can give us the most answers.
Regan Jones 11:50
One thing that I did want to ask and you didn't mention this in your myths. But it is something that I know came to mind when I was getting ready to be tested. And it's kind of actually an uncomfortable answer. It was very uncomfortable when it came up. But it really is about whether or not getting genetic testing. And what it says about you can somehow affect insurance and or life insurance for the future. So is that something that you can expand on and talk a little bit about? And let me say up front? I knew in that moment, this was the uncomfortable part that my genetic counselor said, essentially, well, you have cancer. So your life insurance effect, the effect on your ability to get life insurance has already happened because you have this diagnosis. But I know that health insurance is something that's of concern to people. Can you talk about that?
Charly Harris 12:43
Absolutely. We have a law that came out in 2008. It's called the genetic information non discrimination act, or what we will call Gina, it came out and it actually protects health insurance and employment. So health insurance and employment can't request our patients genetics records that can't use them in any way to take away health insurance, decline it change premiums, people can't be fired, not hired because of these genetic test results. Obviously, health insurance might come across these results if they need to help cover some of the management, but they can't use them against you, with the law, unfortunately, and to this day, still cannot protect Long Term Care, disability and life insurance, anything in place. It's safe, it's protected. It's when we have people who want to go and get genetic testing because that family history, they themselves have not had cancer, they might really want to consider Am I happy with that life insurance, if not definitely something to do before we move forward that testing because we do unfortunately, see people who are young, they have no history, and now we're telling them they have a much higher cancer risk. And while our goal is to help reduce it and prevent it, life insurance is going to see that as a pre existing condition. And we do see people denied
Regan Jones 13:53
Yeah, that's so unfortunate. I mean, you know, I understand it, I guess, in some ways from a business standpoint, but you know, having a genetic marker is not an absolute prescription for you are going to get cancer. I mean, it certainly increases your risk. And I would say that what I've learned about it is one of the most important reasons that I'm glad that I did it is not that I don't know that I could get breast cancer, I mean, that ship has sailed or I know that but because there are these other cancers, I can be more mindful to monitor for them it you know, it it essentially sent me in for getting a colonoscopy probably quicker than I would have, you know, knowing. And that's really what my medical team kind of stressed was the big takeaway is that once you have this information, it doesn't necessarily change anything but it puts you on alert to just be more mindful of monitoring and getting tested and, and just being on top of those things. So gosh, that that is very frustrating. But it also kind of goes back to what you said in the very beginning somebody who already has the diagnosis in your family if they are the person who can do I get the testing done. You know, they're the person that has honestly kind of been already affected by a diagnosis. But something to consider. And I would just say personally, I would give the advice. And I'm curious, I'm assuming you would feel the same way that if you are going to do genetic testing, you meet with a genetic counselor like yourself ahead of time, before you get the genetic testing done, so that you can talk through kind of all the ramifications,
Charly Harris 15:27
right. And I absolutely agree, obviously, a little biased. But we do have patients who do some random research studies, or they'll have a family friend order a test, and they get to us. And we do have to break the news that you might not ever get life insurance now. And that's something that it's not widely known. And we do see it almost weekly, where patients are really surprised by that. So when we have patients who come back as having some kind of mutation, we really push to talk to their relatives to do look at their insurance before they ever even make an appointment. We don't want anything in their records that could prevent them from getting anything. Um, so we do provide handouts, we talk about it a lot. But like I said, just not everyone knows about it. So it's really hard to make sure that everyone's getting the same protections that they should get.
Regan Jones 16:10
Yeah, that's one of the additional reason that I wanted to do this podcast is to just get people armed with that information so that they, you know, decide to go about things in a stepwise process that, you know, basically gives them the best information, gives them the best consultation and protects them for the future. And on that same note, what is your advice then, for women who would like to meet with a genetic counselor would like to potentially consider this? How do they I mean, I know that I found, I found our genetic counselors because of the breast health center that I had here at my hospital. But how do people go about doing that? You know, in their, in their locations?
Charly Harris 16:48
Great question. There's actually a really wonderful resource. It's a website called Find a genetic counselor.com. We have a National Society of Genetic Counselors, or in SGC, who has created this source for all of us to put in our information and say, whether we're willing to have patients contact us, it really helps you even narrow it down to like your city, you can narrow it to whether you want to be seen in person or virtual, you can go through and look at all the names that pop up and contact those clinics and find somebody who can help you get those things scheduled. So it's really, it's really a one stop shop, to where even if you want to help relatives, that's where I send all my patients to you can put in any study and find people, unfortunately, not everywhere, has genetic counselors. But with the COVID situation that we had, we are now seeing almost everybody offering these virtual options. And while we do have laws that prevent certain counselors from going outside of their state, I'm seeing I'm seeing coverage in almost every state every location that people can find at least somebody virtually if they need to.
Regan Jones 17:48
And so the website that Charlie just mentioned was find a genetic counselor, I will of course, place a link, as I always do with every episode in the show notes, so that you'll easily be able to find that. Now. I think that just the last, I guess question before we move on, would be just for you to kind of walk through with people what information that they can get from genetic testing. And really, when they get that information, you know, what should they do with it?
Charly Harris 18:16
So we can get a few different things from genetic testing. For somebody who has a history of cancer, obviously, our first goal is, is there an answer here for why did you develop this cancer? For some people, it can help their treatment, especially when we're seeing people who are diagnosed with breast cancer, and they're not sure what kind of direction they want to go in surgically, some of these results might lead them towards a larger surgery. And we might change those plans based off this test results. For some people, it could change types of chemo that might work better for you. But our other big goal that we see a lot of people wanting to do is how does this help relatives? What does this mean for our children or sisters or brothers? With this, we do get back information that tells us are there other cancer risks that maybe we're just not aware of? Even though mom might have breast cancer? Are there other things like we were talking about with that colon cancer that prostate? Is there anything we can do for relatives to help determine what are our best management plans? Do we start screening sooner? Or do we screen more often, we do see people who are starting some of these breast screenings as early as in their 20s, which is not something the average person can go and do. And we're seeing people get extra management extra care that the typical person can't just walk in and ask for these things. So we're not trying to scare people into anything. We're not going to sit here and say you've got all these cancer risks. Our big goal is to really empower our patients with this information to help make the best health decisions they can. What can we do to help with anything, and a lot of the times we're always available and happy to help find these resources. We're not going to just let you be on your own to face these cancer risks. We really want to help you find these providers get these things done help you keep up that management. So that way we are reducing Cancer as much as possible monitoring it more often than the average person.
Regan Jones 20:03
Yeah. And you know, it's that monitoring component that really does ultimately, for most people lead to early diagnosis. people here who've listen to this podcast, they know my story. And unfortunately, I was not diagnosed as early as you one would hope because essentially, my, my cancer was missed on mammogram. But that's not necessarily the norm, you know. So what we hope is that people who know that they have a genetic risk for any type of cancer are just going to be a little bit more aggressive in being monitored, and making sure that, you know, when that appointment comes up, they don't just say to themselves, Oh, I'm busy, you know, they put that to the side, or I need to reschedule that or not even schedule it, that it'll give them an opportunity to be a little bit more aggressive with, with their monitoring. A couple of other points that I wanted to expand. And while we've talked about maybe some of the unfortunate parts of what can happen, like you mentioned with life insurance, and some of those types of things with genetic testing, and whatever it shows, I want to flip it back to maybe a more positive note insight, because you alluded to this in your in your last answer. And that is that for someone like me, there are extra monitoring steps that I will be taking basically for the rest of my life the insurance pays for because I am in this risk category based on this gene deletion. Whereas you know, I think that's, that's a positive, you know, if I if if I didn't know this, I don't know that the same monitoring in the same carrier would be happening. So that's just, that's one thing. And I, you know, I know, insurance is all over the place, and what people get covered for and don't get covered for even amongst different, you know, just the same insurance company and different plans can be crazy, complicated. But in my case, it does put me in a risk category that helps me get some additional testing. That's one just comment that I wanted to make. The other thing, I don't know if you can kind of walk this out a little bit. But I remember when I sat down with my genetic counselor, one of the things that was most impactful to me and and sitting in the moment of you've just been recently diagnosed, there's so much information coming your way, and so many overwhelming decisions to make, and it can be almost crippling, and I remember initially being very hesitant to have genetic testing done. But my genetic counselor showed me in some of the material, it was like a grid, and it showed all of these different gene mutations, deletions, and all of these different cancers. And it was like, it was it was almost like a chart where you could say, Okay, for this gene deletion, it increases the risk for this cancer, this cancer, this cancer, but not this cancer. Can you just kind of talk about that a little bit, because that that made such an impact on me to see that it's a big matrix, it's not just one cancer, for the most part with any of these genes,
Charly Harris 22:57
definitely, we have anywhere between about 80 to 100 genes that are commercially tested right now, the lab I tend to use is about 84 genes, what we call our multi cancer panel. And it's very, very few genes with another only going to have one cancer risk. It's rare that I am contacting a patient and saying we're only fine, this one cancer risk for you. So for a lot of people, it is a lot of information, but it gives us a lot of things to focus on. And we're always learning new things. We constantly tell people, while we're telling you today, there could be these three cancer risks, we want you to revisit this idea every couple years, make sure we're not discovering new information, new risks that we can focus on. But we do like you said, we do have charts that they're really great visuals that have a list of cancers going across the top and all the genes going down the side. And so many of them are overlapping. And that's why we really have kind of strayed away from let's just test these like five breast cancer genes, we're really doing a lot larger testing, we don't want to miss anything, because we're we've learned so much in the past even just five years, that there are so many cancers that could be related to genes that we just didn't know about. And we really want to just tell us as much as we can, that the patients are willing to and comfortable with. So that way we can target anything that we can bind.
Regan Jones 24:19
Yeah, that's a really good explanation. And the reason that I highlight it is because again, as I talk to people, oftentimes I will hear their story. And it's a lot easier to, you know, kind of look at things differently on this side of my diagnosis and kind of see where I used to make some assumptions, but I will hear people talk about their family history of cancer. And there it does seem sometimes to be this tendency to, I think kind of like what you were talking about in the very beginning, you know, male cancers, air quotes, male cancers versus female cancers, there does tend to seem to be this acknowledgment that oh, well, if this was a predominant cancer in my family only, then that's the only one that I'm at risk for. And I think that's kind of where I've come to realize, unfortunately, for those of us who have some sort of either gene deletion or mutation or whatever the risk is in multiple categories. And the good news is that for some of them, it's not in other categories. And that was very reassuring to me, because there were some particular cancers that I was concerned about the risk for, and for my particular gene deletion, deletion, they don't show up at this point, you know, as being high risk for that. So, Charlie, is there anything else about breast cancer genetics, or genetic testing in general that you think that my audience needs to know,
Charly Harris 25:39
I think something I realized I haven't really hit on a lot is the importance of even getting a negative test result. And what does that mean for people, when we have those that are especially unaffected if their mom and their sister, and everybody has breast cancer, and we can't test those people, it's not that we can't test them, we're still going to test our patient. And while it's limited, and what information we can get, we can never determine if mom had a genetic mutation, at least we can get rid of some of those really high risks, we have genes that are as high as 60 to 80%, breast cancer risk. And if we can pull all that out, we're still going to put our patients above the 12% general population, we still might recommend some high risk screening, but we're going to rule out a lot, we're going to give people a peace of mind, we're going to be able to say, hey, with this really large panel, while we have breast cancer in the family, we're still going to put you at a closer general population risk for other types of cancers. It's still valuable information that we can give, even if it's a little limited. And I think for many years, we failed in that category of telling people, you don't have cancer, we don't need to test you, or a lot of people thinking, Oh, I have negative genetics. So I have no cancer risks. And those aren't really what they mean. But we can still give you so much valuable information with that result.
Regan Jones 26:51
Well, Charlie, you have just been packed full of knowledge today. And I really appreciate it. I know that we gave everybody the mention of the Find a genetic counselor website. But do you have any other websites that you would like to direct people to for more information
Charly Harris 27:08
I do, I have also included a link for facing our risk of cancer empowered, or what they call force, it is a group that I have worked with a lot, a ton of my patients find lots of value in it. It is geared towards women who have done genetic testing and have found a genetic mutation that was created by a woman who she herself has a genetic mutation was not finding the things online that she could really get value from this website is kind of everything you could ever think to Google but still being in a very safe place. And there's so much about clinical trials and insurance coverage and finding message boards and support groups. And I would encourage even people who haven't done genetic testing, if they want to go and view their articles about hereditary cancer, it's just such a safe place for patients to go to and get valuable, correct information without having to be scared by things on Google.
Regan Jones 27:58
Oh, that's, that's a really good resource. And I actually put an asterisk beside that website in my notes, I'm gonna, of course, include a link to it in the show notes, but I want to go check it out as well, because I wasn't familiar with that. And I can tell you, as you all to well know that if you get out there and you start Googling your gene mutation, you will very quickly jump off and decide, You know what, I don't want to see some of those stories. So a safe space is a good thing when it comes to looking at that information. Well, Charlie, I really appreciate you joining me today. Thanks so much.
Charly Harris 28:30
Regan Jones 28:32
Okay, that wraps up my interview with Charlie, I'm going to drop in a quick commercial break. But please do hang around for the odds and ends ending of today's show. To preview for you what we're going to be talking about, I'm going to talk to you a little bit about genomic testing, which is different than genetic testing, I'm going to talk to you about braca one and braca two, just so that we can lay the foundation of of two terms that I've mentioned in this podcast multiple times. And then lastly, I'm gonna talk to you about a sentinel node biopsy and how that differs from what has been done for many, many years with breast cancer surgery.
Regan Jones 29:06
Today's broadcast is brought to you by your color guru, your color guru.com is where I went this last year to get my color consultation done. And there's a little bit of comedy in thinking about having your colors done. I say that in air quotes because many of us as unmillennials, remember back in the days of the 80s of doing your color, but let me tell you what your color Guru is doing is so far beyond that. And they're giving you so many tools when you actually have your colors done. And the reason that I say so far beyond that is because back in the day, when we would find out what our colors were I think it was like four seasons winter, summer, fall and spring but your color Guru is much more robust than that. For instance, I'm a moonlit summer which is different than a sunlit summer. And one of the things that I love the most about your color guru and the color consultation consultation One that I had done is that it comes with a color card, I have both a printed card that I can throw in my purse, so that when I am out shopping, I can pull that card out of my purse and hold it up to anything that I'm looking at to determine, hey, is this one of my best colors. I also have the JPEG on my phone. So if I don't have the card with me, I just simply look at my phone and it has been invaluable. It makes shopping so much easier. So if you are interested in having your colors gone, or gifting it to someone else, you can get 10% off of your color guru consultation by simply using the code Regan, which is our E g a n at checkout at your color guru.com. There's a link in the show notes.
Regan Jones 30:44
Okay, as I said before I dropped in that quick commercial break. My goal really today in this episode is to make it a fairly comprehensive episode that talks about some of the things that are what I consider newer in terms of breast cancer, either treatment, or diagnostics, surgeries, procedures, things that, you know, when my mom had breast cancer years ago, not that many years ago, but years ago that weren't available or talked about now, you've heard me mention, at least I believe once in this episode, and I'm fairly certain in my comprehensive episode that I first did when I was diagnosed, that my mother did have genetic testing done after her second occurrence of breast cancer. But at the time, the only genes that had been identified as an increased risk of breast cancer, were BRCA 1 and BRCA2. If you've never heard those terms, let me briefly explain BRCA 1 and BRCA2. Two, because they are the most commonly recognized breast cancer associated genes BRCA 1 and BRCA2. They really are called BRCA 1 and BRCA2 because they are labeled as breast cancer. So B our breast cancer ca genes one and two are the most well known genes linked to breast cancer risk, everyone actually has BRCA 1 and BRCA2 genes, but some people have an inherited mutation in one or both of these genes that increases their risk of breast cancer in the general population in the US about one in 400 People have a BRCA 1 and BRCA2 gene mutation. However, the proportion of people who have a BRCA 1 and BRCA2 gene mutation does vary by ethnic groups. And I want to make this point that among Ashkenazi, Jewish women and men, about one and 40 have a BRCA 1 and BRCA2 gene mutation. So very different incidents there in that particular group of people in terms of the proportion of people who have bracket one or bracket to gene mutations. And the reason that BRCA 1 and BRCA2 are really important to talk about is not only that it's a significantly increased risk of breast cancer beyond the general population, but there also is an ovarian cancer risk. So it is associated with BRCA 1 and BRCA2. So again, really the oldest breast cancer genes that we know of. And in terms of overall risk for breast cancer with people who have a BRCA 1 and BRCA2 gene mutation, their overall risk is more than 60% higher for women who have BRCA 1 and more than 60% higher for for women who have BRCA 2 the general population risk is 13%. So I know I threw a lot of numbers out there at you, I don't think that these are things to necessarily commit to memory. But it's just to illustrate how prominent BRCA 1 and BRCA 2 are in the conversation about genetic risk for breast cancer. And so I have found as someone who does not have BRCA 1 and BRCA 2, but I do have a different gene deletion, I found that people just seem to know a lot about BRCA 1 and BRCA 2, but they don't about these other genes. And that was why I wanted to have Charlie on today to discuss the fact that there are what did she say? I think she said 84 genes that she looks at, you know, in terms of different risks. Okay, so that's genetics. All right.
The next thing that I want to bring to your attention in the event that it's ever helpful to you or to someone you know, is that there also now is something called genomic testing. Specifically I know of two cancer genomics. And when I say cancer genomics, I mean, these are this is genomic testing that is done on the actual tumor itself. I know of two different ones, Oncotype and MammaPrint and my guess is that you likely have not heard of either one of these fairly new tests. But what these tests do is essentially help determine or predict how likely cancer is to respond to certain types of treatment and or have a recurrence. And these are big things, especially when it comes to MammaPrint. It's more for early-stage cancers. These are big things to know When you're trying as I was to make a determination about whether or not you wanted to take chemo and let's be honest, nobody wants to take chemo. But when they're able to give you some statistical indication of what your decreased risk is, with your particular type of genomic tested cancer, your tumor that's been tested, the genome has been tested for it, when they're able to give you some sort of idea of statistically what kind of increase reduction of recurrence risk you will achieve or likely to experience by taking chemo, it really helps to make a very, very tough decision. So I am not going to go into all the science behind oncotype or MammaPrint. Frankly, I am not an even learned enough to speak on it super intelligently. But I can tell you, from my experience, I really didn't want to take chemo and there was some conversation about whether or not you know, the risks outweighed the benefits, excuse me outright the with risks, that's certainly a conversation when it comes to taking chemotherapy. But knowing some of the things specifically about my tumor, and kind of pooling that with other people who had had exactly the type of cancer that I'd had, and knowing how that could add to a reduction in risk for me, made it a much easier, I guess, decision. And I would say, again, as a very comprehensive episode, where we're talking about a lot of different things about cancer. I've mentioned it briefly in this episode, and probably said it in passing in the past. You know, one thing to know about people who are newly diagnosed with breast cancer, and I'm sure many, many other diseases is that it is absolutely overwhelming the number of tough decisions that you have to make, I think people tend to often think that, you know, you have a physician that's making all the decisions for you. And I'm sure that that happens. But by and large physicians are giving you information and letting you make the decision based on what's right for you. And when it comes to things like cancer treatment, oftentimes, what you find yourself looking at is like, I don't like any of the decisions, like I don't like any of the choices. And that is why having some of these new technologies that can take a little of the emotion out and the fear out of the decision and put it back in the hands of statistically, this is what we know. It really does, I think help with some of that decision-making process.
Now, the last thing that I wanted to briefly mention to you and something that I did not have to struggle with in making a decision was having a sentinel node biopsy, let's talk about what a sentinel lymph node biopsy is. If you have ever known someone who had breast cancer surgery, a number of years back, my mom falls into this category, you may recall that they often when doing either a lumpectomy or mastectomy, would take out many many lymph nodes that you know, would run down the side of their arm and just be in this whole area. And it would make it so that sometimes some of those women experienced swelling, lymphedema, make it so that you know they never could have blood drawn from that area, no sticks on that arm, because they're essentially just taking out all the lymph nodes and doing that in order to see if any of those lymph nodes had been invaded by the cancer cells. Well, in recent years, the breast surgical oncology community has begun to transition not entirely, but many surgeons and my surgeon was one of them has transitioned to what's called a sentinel lymph node biopsy. So the sin a sentinel lymph node is as it's been explained to me what they call the first drainers out of the out of the breast and taking a step back, you know, your lymph system is all over your body, you have lymph nodes all over your body that are, you know, aiding in immunity and you have of course, a cluster right around your bet breast and what they can do with a sentinel node biopsy is they can remove only the first drainers the first lymph nodes that the limp fluid from the breast will drain into, they can remove just those that can be anywhere from I think, one to three, somewhere in that number. I had two removed that were identified as sentinel lymph nodes, and they can look at just those as an indicator of whether or not the cancer has spread to those lymph nodes. And I won't go any farther in terms of like what happens next, if all of the lymph nodes that they take out are involved. I think there potentially can be additional surgeries. In my case, that was not the case. And there were no additional nodes beyond the sentinel lymph node biopsy that had to be done. One of the reasons that I share this is because in talking to people who work in breast surgical oncology, you know, especially for younger women, and I'm knocking on the door of 50. But when I was diagnosed I was 46 years old. So certainly considered a younger woman in terms of diagnosis, very active. As you all know, I was lifting weights, right up until the day that I was diagnosed and got back into lifting weights while I was taking radiation, and it was really very, very important to me to be able to, as much as possible maintain, you know, my activity level. And because of some of the complications that people experience when they have all of those lymph nodes taken out of their arm, that really gave me some concern and hesitation. So like I said, that was not a difficult decision for me probably couldn't have done it any other way. And that's what my surgeon does. He specializes in sentinel lymph node biopsies as a part of his breast surgical oncology care. And I just have to say he is just absolutely one of the best doctors and surgeons and physicians that I have ever come across. So easy, easy decision, there have been very, very happy with it. And again, just share that with you so that you know some of the evolution and the improvements that have been made in breast cancer care. If this is your first time listening to This Unmillennial Life and you don't know my story, you also might be interested to know my experience cold capping, which is a process of using a cold cap scalp cooling system to help reduce hair loss during chemotherapy. And as a comprehensive wrap up for this whole episode. What I'll do in this particular episodes, show notes, I'm going to place not only links to the websites that Charly mentioned, but also I will place links to the episodes that I've done in the past where I talk about my breast cancer diagnosis, there's some really, really important information in there, just in terms of breast cancer being missed in women who have dense breasts, the importance of asking for an ultrasound, if you ever get called back for a diagnostic mammogram, and they're identifying an area of concern, really being an advocate for yourself. And then I'll place links to three different episodes that I did about my coal capping experience, because that arguably is one of the ones that people know the least about, but is the most intriguing and interesting to many, many women who will have to take chemotherapy, but we'd like as much as possible, not to lose their hair, if possible. So with that, I will wrap this episode up and I'm going to ask you to please share this episode as we do enter into October as Breast Cancer Awareness Month. One of the things that you can do is share this so that other women kind of see the bigger picture of what's happening in the breast cancer community. Being armed with information is one of the best tools that you can have in your corner when you are diagnosed with breast cancer and having some positive stories about some of the new technologies is very, very reassuring. So I want to ask you, just to consider how you could share this a text to a friend sharing it on Instagram, sharing it on Facebook, if you're not in the Facebook group, that group is at facebook.com/groups/ThisUnmillennialLife I will be sharing of course on my Facebook page and on my Instagram page. Instagram is ThisUnmillennialLife for this particular podcast. I will be sharing information about this episode. And if you can hit the share button and pass that along in time for breast cancer awareness month. I would personally appreciate it and I also just appreciate anytime that you share This Unmillennial Life with a friend sharing with a friend is by far one of the best ways that This Unmillennial Life grows. And with that, I'll say thanks so much for tuning in today. Listening, subscribing and downloading. Hope you have a great week