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
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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
Thank you.
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
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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