September 28, 2023 • 21 mins
Hosted by comedian and 2x ovarian cancer survivor, Karen Mills, and featuring Dr. Gizelka David-West, Gynecologic Oncologist at Northwell Health and lead singer of the band N.E.D.
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Speaker 1 (00:05):
Welcome to What To Know Down Below by Tina's Wish.
We're here to empower you withthe knowledge and tools you
need to advocate for your owngynecologic health. Knowledge
is power, and we encourageeveryone to join us in learning
more about what you need toknow down below.
Speaker 2 (00:28):
Hi everyone. My name is Karen Mills, and I've been a
nationally touring comedian forover 25 years and am a two-time
ovarian cancer survivor. Todaywe're kicking off our
three-part series, ovarianCancer 1 0 1, in which we will
be covering the basics ofovarian cancer. Before we
begin, I want to give you ahigh level overview on ovarian
(00:52):
cancer. Ovarian cancer is thenumber one deadliest
gynecological cancer . 80% ofwomen are diagnosed at an
advanced stage. The five-yearsurvival rate for those
diagnosed at advanced stages isonly 27%. 200,000 annual deaths
are attributed to ovariancancer globally. And our goal
(01:14):
at Tina's Wish is to changethese numbers. I'm so excited
to introduce our subject matterexperts , Dr. Gazelka David
West. Dr. David West is arenowned gynecological
oncologist at Northwell Healthand the lead singer of the band
, NEDA Rock Band, formed byfive gynecologic oncology
(01:38):
surgeons. Welcome.
Speaker 3 (01:41):
Thank you, Karen, for introducing me and inviting
me to this awesome, awesome,informative talk. I'm so
excited. This is great.
Speaker 2 (01:52):
. I, I need
to know about this , uh, this
band.
Speaker 3 (01:56):
Yeah. So as you mentioned, I am a GYN
oncologist with NorthwellHealth. I'm actually in our
Westchester region of New York.
Um, and yeah, I am the leadsinger of No Evidence of
Disease or NED, which you verymuch know what that term means
as a survivor. It's a , thewords all cancer survivors are
(02:19):
cancer patients want to hear atthe end of their journey. Yes.
And so we are an advocacy andawareness band for gynecologic
cancer. Um, our slogan, or oneof the , um, former members had
quoted breast cancer has aribbon, gynecologic cancer has
a band. So I think we , we makea lot more noise, .
Speaker 2 (02:39):
I love that. That's so cool. Yeah. . Well,
today , uh, we'll be talkingabout the signs and symptoms of
ovarian cancer. So let's startwith the basics. What is
ovarian cancer?
Speaker 3 (02:53):
Sure. So , um, we'll go even more basic to what are
the ovaries, right? I thinksome people listening may not
even know what ovaries are.
Right. So they are these smallorgans that are part of the
reproductive tract of females.
Um, and they are the powerhouseof the female reproductive
tract. Uh, they house ourhormones, estrogen and
(03:13):
progesterone, and as many otherorgans in our body, they can be
at risk for it turning intocancer. Um , what's unique
about ovarian cancer is theterm ovarian cancer kind of is
an umbrella term for , um, twoother cancers that all kind of
are intermixed and are similar.
(03:35):
Um, a lot of research has toldus that ovarian cancer really
starts at the fallopian tube,which is also a structure part
of the reproductive track . Andso fallopian tube cancer,
ovarian cancer, and thenanother term primary peritoneal
cancer, are all kind of underthis same umbrella of , um,
ovarian cancer. With these, atthe cellular level, these , um,
(03:59):
cancers can develop in eitherof those regions of the
anatomy.
Speaker 2 (04:04):
Well, what are the, the typical symptoms or warning
signs that someone might have ,uh, ovarian cancer?
Speaker 3 (04:10):
Right. So this is tricky and it's actually really
tough . Um, ovarian cancerdecades ago used to be called
the silent killer. Right. But ,um, over years of research and
discover , we found that thereare actually symptoms. The
symptoms are just so vague andtend to be misdiagnosed , um,
or just disregarded. Sosymptoms such as bloating,
(04:35):
feeling full after eating smallmeals, maybe some nausea, some
vomiting, having urinarydiscomfort or symptoms of
frequency, urgency, pelvicpressure. Um, all of these can
be chalked up to anything , um,anything related to other parts
of your body. But these are ,uh, some of the symptoms that
(04:56):
we see with ovarian cancer.
Speaker 2 (04:59):
For me personally, I , um, you know, I just felt
bloated and I never felt like Icould empty my bladder. And I
had this , um, and I wasfatigued and, but I just wrote
it off as menopause becauseeveryone my age was tired and
(05:20):
, I didn't feel likethey could empty their bladder.
Mm-hmm . Youknow, that wasn't anything
unusual. And , um, so, youknow, I just, and I had this, I
could not lose my stomach and I, and I was trying to , uh,
diet and exercise and Icouldn't understand why I
couldn't lose my stomach. ThenI thought, well, you know, I've
always heard people talk aboutgetting a spare tire tire at
(05:42):
middle age and all that, so Ijust completely wrote it off to
to middle age spread kindathing .
Speaker 3 (05:49):
And I cannot tell you how many times I've heard
that story over and over andover. And I think the key to
these vague symptoms, or couldjust be menopause or just a
urinary tract infection, orit's your inflammatory bowel
disease. Right. How many timeshave we heard that the , the
important part to remember isthe persistence. If these
(06:13):
symptoms are not going awayafter two weeks, they're there.
You've tried the heartburnmedicine, you've tried to empty
your bowels, you'vetaken the medicine for the
urine infection, but thesesymptoms are still there.
That's when you really need tostop and pause. Is there
something else going on? Whathasn't been checked yet? And I
(06:34):
think that's , um, that'sreally the crux of it, and
that's how we can hopefullyhelp prevent the misdiagnosis
that we see so much of.
Speaker 2 (06:43):
Well, and there was one time, you know, aside from
just those basic symptoms , uh,I was experiencing, I did have
one time where I had reallyexcruciating pain in my abdomen
and it lasted for about 30minutes and I almost went to
the emergency room that night.
But instead I went to WebMD and, uh, diagnosed myself
(07:03):
with IBS. So , as yousaid, a lot of people just
think it's that, and , but thatwas the only time there was any
real pain. Right . And so,again, who hasn't had cramps,
so I just thought Exactly.
Speaker 3 (07:17):
Exactly. The , and pain doesn't , n doesn't
necessarily always presentitself in these situations.
It's not always pain, but likeyou said, it could be just this
one episode that kind of comeflares and goes, and that's
what happens. We kind of godown the internet rabbit hole,
you know, and , um, the WebMDis great, Google, md, whatever
you want. But MD we still, westill matter that clinical exam
(07:40):
, that I
Speaker 2 (07:41):
Know you do. And it's so , and that's why ,
that's why I bring that up,that, you know, I , I didn't
need to diagnose myself. Yes,we can Google things and we can
get an idea of things, but youneed to see a doctor.
Speaker 3 (07:55):
Sure , for sure.
Speaker 2 (07:56):
'cause there's a lot of things that can present
themselves as, as thosesymptoms. And you don't need to
decide absolutely yourself thatthat's all that is .
Speaker 3 (08:04):
I will , I will say though, seeing the right doctor
is key. Right. I think there's,sometimes you may go to the
primary care or agastroenterologist and they
will do their own workup forsomething, but then won't think
about ovary cancer. Right,right . Or any other
gynecologic cancer. So makingsure you loop in your
gynecologist as your kind offiguring out what is going on
(08:26):
with me. 'cause that's reallyimportant as well.
Speaker 2 (08:30):
Absolutely. And I , uh, I had a scheduled
appointment coming up afterthat pain episode, like only
like six weeks later. So Ithought, well, I , I'll just
wait and talk to her aboutthen. And so , uh, she was
examining me and when she gotto my abdomen, I mean, the
blood drained out of her faceand she said, you have a huge
mask . And she said, didn't youfeel that? And I said, well, I
(08:53):
just thought it was weight i'dgained gained from menopause.
And I later felt really stupidbecause I did notice it wasn't
as soft as like fat, it wasmore dense. And so that should
have been, you know, thatshould have been a clue, but
you just don't, but
Speaker 3 (09:09):
At hindsight is 2020. Right. You know, it's ,
um, I, I never, anytime I meetpatients who share their story
like this, I I always start offwith reminding them that it's,
it's not your fault. Nothingwrong. You did. I mean, this
is, it's human nature to thinkof other things and not think
of the worst. Nobody wants tothink they have cancer . So we
(09:31):
think of everything elsethat's, you know, fixable and
easy. Right. Um, but , um, um,but yeah, it's, it's tough.
It's very, very challenging.
Speaker 2 (09:43):
Well, what is the difference between the symptoms
of ovarian cancer and symptomsof other gynecologic cancers?
Speaker 3 (09:50):
Yeah. So , um, as I mentioned, ovarian cancer,
these are very vague symptomswith the other gynecologic
cancers, particularly let's sayuterine cancer or endometrial
cancer, this is , uh, the,actually the most common one
that we see. You have vaginalbleeding, right? Uh ,
particularly post-menopausalbleeding. Right. So any blood
(10:12):
after menopause is not normal.
Right. And so the minute yousee that drop of pink brown ,
um, or heavy bleed, it's not ohmy period coming back. It needs
to be worked up. You know,there's no telltale sign like
that for ovarian cancer.
Another cancer that we dealwith is cervix cancer. Cervix
cancer is , um, typically youcan still have abnormal
(10:35):
bleeding, but a lot of timesit's diagnosed based on a
series of, let's say, abnormalpap smears , um, that then show
abnormal cells and then abiopsy. Right. But more
advanced stages of cerv cancercan present with pelvic pain,
pressure, back pain, legswelling, bleeding, urinary
discomfort. So kind of a littlecrossover in symptoms. Um, but
(11:00):
I will say those cancers havemore telltale signs than you
would particularly see withovarian cancer. With
Speaker 2 (11:06):
Ovarian. Uh, and, and you should wait, you know,
when you start feeling anythingor seeing anything unusual that
you're not sure about, youshouldn't let it go more than
how long, couple of weeks or,yeah.
Speaker 3 (11:21):
I mean my and my rule book, the minute
something, especially thevaginal bleeding, let's say
that to me is, is fear . Ifit's kind of abnormal for,
let's say you're a menstruatingwoman and now you all of a
sudden have irregular menses orperiods that have never
happened to you before you callyour doctor 'cause you don't
know what their schedule is,they may have , they
may be booked up. Right? Right. And so you might , they'll
(11:42):
make that call and get on theirschedule 'cause they may not be
able to see you for another twoto four weeks. Right. Right.
Speaker 2 (11:48):
Um ,
Speaker 3 (11:48):
And then , um, but for example, if these vague
symptoms of ovarian cancers wedescribed, yeah. If it's two
weeks of kind of thispersistent symptoms that you're
just, they're just not goingaway. You've tried certain
remedies, you gotta make thatappointment. You gotta call the
doctor, get it checked out.
Speaker 2 (12:06):
And is there any type of early , uh, detection
screen at the doctor's office?
Like pap smear membrane ? Right? No.
Speaker 3 (12:13):
Yeah. You bring up pap smear. So pap smear , uh,
is purely designed to screenfor cervix cancer. Uh, I think
that's a misconception and amisunderstanding. Um, you know,
I think pap smear for a longtime was synonymous with , oh,
I'm going for my GYN checkup.
I'm going for my pap smear. Youknow, that's gonna, that's a be
all end all screening foreverything. But it's
(12:34):
unfortunately not. It's purelyjust screening for cervix
cancer. And it's an excellenttool for that. But it doesn't
screen for ovary cancer doesn'tscreen for uterus, cancer
doesn't screen for vulva canceror vaginal cancer. Right. So
it's purely detecting on thecervix. Now, could it , could
that test pick up some abnormalcells that maybe trickle down
from, let's say, the uterusonto the cervix? Sure. Have we
(12:56):
diagnosed uterus cancer from apap smear? Sure. But that's not
designed for that. We haven'tyet diagnosed ovarian cancer
from a pap smear. Um, butagain, if little abnormal cells
kind of trickle down that don'tgo along with the cervix, then
that clues in the doctor to,Hey, let's do more testing. Why
is this happening? But it'sreally not a , it's not a
(13:17):
screening test for ovariancancer. And so we really don't
have a screening test forovarian cancer, making it that
much harder to detect thisdeadly disease.
Speaker 2 (13:27):
This may be a stupid question, but it certainly
won't be the first one I'veever asked. Um , , is
there any reason to get a papsmear after you go through
menopause?
Speaker 3 (13:39):
That's a great question. I love this question.
And so the answer , um, is yes,because guidelines state that
up to age 65 you should begetting pap smears. And
depending on your history, likeif you've had all normal pap
smears your whole life, HPVtesting, 'cause that's part of
the pap smear and screening forcervix cancer is HPV human
(14:00):
papillomavirus testing. Um, ifall that's been negative your
whole life, you get to 65, youcan have that one last pap
smear and say , and see youlater , um, see you later to
pap smears, not see you laterto your gynecologist. You
should still go every year foran exam. 'cause you still have
a vulva, you still have avagina. And if you still have
those internal organs, they'rethere and something could
happen. And I think thoseyearly visits , um, are helpful
(14:24):
because you may bring up asymptom or, or a sign that you
may didn't think of, think wasanything, but then your doctor
gets clued in and starts aworkup, then may find something
early as opposed to late stage.
So definitely keep going. Iwould tell patients, keep going
to the gynecologist.doctors can end at some point ,
(14:45):
but keep gonna the gynecologistgo say hi, make it a social
visit.
Speaker 2 (14:49):
That's , that's very good information to know.
. Um , and for me, my ,um, uh, ca 1 25 blood test was
a, a big , um, telltale sign.
Um, for anyone who doesn'tknow, normal range is zero to
35 and mine came back at11,000. So , um, that is
(15:11):
something we continually check.
And when I had my recurrenceafter the exam, everything
seemed fine. And then , uh, I,they did the blood test and it
came back like four something.
And that was reason forconcern. And then we thought,
just to make sure it wasn'tmostly elevated because of it ,
(15:31):
tell me if I'm wrong, but myunderstanding is that , uh, ca
1 25 measures inflammation inthe body and other things can
cause it to be high, and that'swhy it's not actually used as a
marker. Is that correct?
Correct.
Speaker 3 (15:46):
Um, it's , um, it's a great test to have once you
have the diagnosis of ovariancancer and like you had
correlated with the disease,went down with treatment, came
back up with recurrence, greatmarker. But for screening the
whole entire population, yousend the C 1 25 and everybody,
you're just getting numbers allover the place. People getting
nervous and maybe havingindicate surgeries. You know,
(16:10):
there's no biopsy of the ovary,just like, let's say breasts.
Breasts, you have mammogramsand if you see something
abnormal, you can do a littleneedle biopsy. The breasts are
easily accessible, ovaries aredeep in your pelvis, bowel and
intestines are kind of floatingaround all over , uh, all over
that area. So you can't juststick a needle to poke at the
(16:30):
ovary. Um, and so what it meansis if you find an elevated C 1
25 or , uh, then you takesomebody to an abdominal
surgery, some kind ofexploration that may not have
been indicated and you'reputting them at risk for
complication.
Speaker 2 (16:46):
And with, with me, I had a CT scan after it came
back elevated at four somethingand the CT scan was negative.
Mm-hmm . And theyretested my ca 1 25 and it had
doubled. Yeah . And so thenthey did a PET scan mm-hmm
. And they founda spot in my lymph node.
Speaker 3 (17:05):
Right. Yeah. So you had a very isolated early
recurrence, small volumedisease that Yeah. That ca 1 25
was, it was rearing its headsaying how , you know,
something's happening, but itwasn't big enough disease to be
at 11,000 like it was when youfirst presented. Yeah .
Speaker 2 (17:22):
Yes. So that , that was very beneficial has been
for me. And , uh, yeah , youexplained there's, it doesn't
always work that way. ,so, yeah . But I think your
doctor can kind of guide you onhow much of a , an indicator
that is for you personally,correct.
Speaker 3 (17:39):
Absolutely.
Absolutely. I think that's ,um, really what we, what we do
when we're , um, sending thatblood test, sending imaging,
correlating everything. I tellpatients, you know, let's
gather all the pieces of thepuzzle. Let's put everything
together, see what we find,then we can make sense of it.
You know, you may have anelevated C 1 25 , but your
(18:01):
scans show fibroids or a benignlooking cyst, which can cause a
ca 1 25 to be elevated. That'snot a reason for concern. It's
a reason for let's monitor,let's repeat, let's trend the
value. Just like in your case,they repeated the number.
Right. I always say also, onevalue is just one snapshot in
time. What is the trend doing?
(18:22):
'cause that trend tells youmore than just that one value.
Speaker 2 (18:26):
I see. Yeah . Well, as you said, misdiagnosis and
underdiagnosis is unfortunatelycommon for folks with ovarian
cancer. And if someone isdismissed by their doctor, but
symptoms persist, what nextsteps would you recommend
Speaker 3 (18:43):
That's , get another opinion, call a friend, find
out who do you know? That's avery good gynecologist, or a
gynecology oncologist sayingthat I'm having these symptoms.
I heard this amazing podcastwith Karen and Dr. David West
as part of Tina's wish. Youknow, I need, I need somebody
to really take me seriously,advocate for yourself. You
(19:03):
know, I think , um, you don'tneed to be a crazy person and
kick and scream, but reallyjust keep pursuing. Again, I've
had those patients as well. Um,some near misses, some
fortunately was just a , youknow, a benign ovarian cyst,
but it all the same symptoms,you know, and then we did
surgery, thank goodness it wasbenign. But then you have the
(19:24):
cases where unfortunately itwas cancer, but you gotta keep
pushing. You know, a lot oftimes, unfortunately, some
doctors may dismiss, dismissthe symptoms or do a
preliminary workup that'snegative and say, oh, you know
, it's just menopause. Youknow, or it's just urinary
tract, you know, we'll see youin a year, but if you know your
body, you know yourself, Ithink that's, you know it
(19:47):
better than anybody else.
Right. And so , ,that's
Speaker 2 (19:49):
What I was gonna say. I mean, you, you have a
feeling. I mean, I've always,you know, since dismissing that
in the beginning to menopause,I've always kind of stayed,
tried to stay in touch with mygut and what I feel when
something is off. And I thinkwe all, if you tune in, you can
always, you know, have thatfeeling and you need to follow
(20:12):
it for sure. And be your ownbest advocate. So , and you
know, anyone can check out ourpodcast on how to advocate for
yourself as a patient for moreinformation. And , uh, you
know, in closing, Dr. DavidWest, I thank you so much for
joining us today and a hugethank you to everyone
listening. We hope you all walkaway from today's episode,
(20:34):
having learned something newand feeling more empowered in
your own health. And if you aresomeone you love , uh,
experience any of the symptomswe discussed today for more
than two weeks, please, please,please see your doctor and
advocate on your own behalf. Besure to tune in for the rest of
our ovarian cancer series as wecover what puts someone at risk
(20:57):
for ovarian cancer and how toreduce that risk as well as the
importance of detecting ovariancancer at an early stage. Thank
you so much.
Speaker 1 (21:14):
For more information about gynecologic health, visit
tina's wish.org/what to know .
That's tina's wish.org/w attT-T-O-K-N-O-W . And like,
follow or subscribe whereveryou listen to your favorite
podcasts.
Welcome to What To Know Down Below by Tina's Wish.
We're here to empower you withthe knowledge and tools you
need to advocate for your owngynecologic health. Knowledge
is power, and we encourageeveryone to join us in learning
more about what you need toknow down below.
Speaker 2 (00:28):
Hi everyone. My name is Karen Mills, and I've been a
nationally touring comedian forover 25 years and am a two-time
ovarian cancer survivor. Todaywe're kicking off our
three-part series, ovarianCancer 1 0 1, in which we will
be covering the basics ofovarian cancer. Before we
begin, I want to give you ahigh level overview on ovarian
(00:52):
cancer. Ovarian cancer is thenumber one deadliest
gynecological cancer . 80% ofwomen are diagnosed at an
advanced stage. The five-yearsurvival rate for those
diagnosed at advanced stages isonly 27%. 200,000 annual deaths
are attributed to ovariancancer globally. And our goal
(01:14):
at Tina's Wish is to changethese numbers. I'm so excited
to introduce our subject matterexperts , Dr. Gazelka David
West. Dr. David West is arenowned gynecological
oncologist at Northwell Healthand the lead singer of the band
, NEDA Rock Band, formed byfive gynecologic oncology
(01:38):
surgeons. Welcome.
Speaker 3 (01:41):
Thank you, Karen, for introducing me and inviting
me to this awesome, awesome,informative talk. I'm so
excited. This is great.
Speaker 2 (01:52):
band.
Speaker 3 (01:56):
Yeah. So as you mentioned, I am a GYN
oncologist with NorthwellHealth. I'm actually in our
Westchester region of New York.
Um, and yeah, I am the leadsinger of No Evidence of
Disease or NED, which you verymuch know what that term means
as a survivor. It's a , thewords all cancer survivors are
(02:19):
cancer patients want to hear atthe end of their journey. Yes.
And so we are an advocacy andawareness band for gynecologic
cancer. Um, our slogan, or oneof the , um, former members had
quoted breast cancer has aribbon, gynecologic cancer has
a band. So I think we , we makea lot more noise,
Speaker 2 (02:39):
I love that. That's so cool. Yeah.
today , uh, we'll be talkingabout the signs and symptoms of
ovarian cancer. So let's startwith the basics. What is
ovarian cancer?
Speaker 3 (02:53):
Sure. So , um, we'll go even more basic to what are
the ovaries, right? I thinksome people listening may not
even know what ovaries are.
Right. So they are these smallorgans that are part of the
reproductive tract of females.
Um, and they are the powerhouseof the female reproductive
tract. Uh, they house ourhormones, estrogen and
(03:13):
progesterone, and as many otherorgans in our body, they can be
at risk for it turning intocancer. Um , what's unique
about ovarian cancer is theterm ovarian cancer kind of is
an umbrella term for , um, twoother cancers that all kind of
are intermixed and are similar.
(03:35):
Um, a lot of research has toldus that ovarian cancer really
starts at the fallopian tube,which is also a structure part
of the reproductive track . Andso fallopian tube cancer,
ovarian cancer, and thenanother term primary peritoneal
cancer, are all kind of underthis same umbrella of , um,
ovarian cancer. With these, atthe cellular level, these , um,
(03:59):
cancers can develop in eitherof those regions of the
anatomy.
Speaker 2 (04:04):
Well, what are the, the typical symptoms or warning
signs that someone might have ,uh, ovarian cancer?
Speaker 3 (04:10):
Right. So this is tricky and it's actually really
tough . Um, ovarian cancerdecades ago used to be called
the silent killer. Right. But ,um, over years of research and
discover , we found that thereare actually symptoms. The
symptoms are just so vague andtend to be misdiagnosed , um,
or just disregarded. Sosymptoms such as bloating,
(04:35):
feeling full after eating smallmeals, maybe some nausea, some
vomiting, having urinarydiscomfort or symptoms of
frequency, urgency, pelvicpressure. Um, all of these can
be chalked up to anything , um,anything related to other parts
of your body. But these are ,uh, some of the symptoms that
(04:56):
we see with ovarian cancer.
Speaker 2 (04:59):
For me personally, I , um, you know, I just felt
bloated and I never felt like Icould empty my bladder. And I
had this , um, and I wasfatigued and, but I just wrote
it off as menopause becauseeveryone my age was tired and
(05:20):
Mm-hmm
unusual. And , um, so, youknow, I just, and I had this, I
could not lose my stomach and I, and I was trying to , uh,
diet and exercise and Icouldn't understand why I
couldn't lose my stomach. ThenI thought, well, you know, I've
always heard people talk aboutgetting a spare tire tire at
(05:42):
middle age and all that, so Ijust completely wrote it off to
to middle age spread kindathing .
Speaker 3 (05:49):
And I cannot tell you how many times I've heard
that story over and over andover. And I think the key to
these vague symptoms, or couldjust be menopause or just a
urinary tract infection, orit's your inflammatory bowel
disease. Right. How many timeshave we heard that the , the
important part to remember isthe persistence. If these
(06:13):
symptoms are not going awayafter two weeks, they're there.
You've tried the heartburnmedicine, you've tried to empty
your bowels, you've
urine infection, but thesesymptoms are still there.
That's when you really need tostop and pause. Is there
something else going on? Whathasn't been checked yet? And I
(06:34):
think that's , um, that'sreally the crux of it, and
that's how we can hopefullyhelp prevent the misdiagnosis
that we see so much of.
Speaker 2 (06:43):
Well, and there was one time, you know, aside from
just those basic symptoms , uh,I was experiencing, I did have
one time where I had reallyexcruciating pain in my abdomen
and it lasted for about 30minutes and I almost went to
the emergency room that night.
But instead I went to WebMD and, uh, diagnosed myself
(07:03):
with IBS. So
think it's that, and , but thatwas the only time there was any
real pain. Right . And so,again, who hasn't had cramps,
so I just thought Exactly.
Speaker 3 (07:17):
Exactly. The , and pain doesn't , n doesn't
necessarily always presentitself in these situations.
It's not always pain, but likeyou said, it could be just this
one episode that kind of comeflares and goes, and that's
what happens. We kind of godown the internet rabbit hole,
you know, and , um, the WebMDis great, Google, md, whatever
you want. But MD we still, westill matter that clinical exam
(07:40):
Speaker 2 (07:41):
Know you do. And it's so , and that's why ,
that's why I bring that up,that, you know, I , I didn't
need to diagnose myself. Yes,we can Google things and we can
get an idea of things, but youneed to see a doctor
Speaker 3 (07:55):
Sure , for sure.
Speaker 2 (07:56):
'cause there's a lot of things that can present
themselves as, as thosesymptoms. And you don't need to
decide absolutely yourself thatthat's all that is
Speaker 3 (08:04):
I will , I will say though, seeing the right doctor
is key. Right. I think there's,sometimes you may go to the
primary care or agastroenterologist and they
will do their own workup forsomething, but then won't think
about ovary cancer. Right,right . Or any other
gynecologic cancer. So makingsure you loop in your
gynecologist as your kind offiguring out what is going on
(08:26):
with me. 'cause that's reallyimportant as well.
Speaker 2 (08:30):
Absolutely. And I , uh, I had a scheduled
appointment coming up afterthat pain episode, like only
like six weeks later. So Ithought, well, I , I'll just
wait and talk to her aboutthen. And so , uh, she was
examining me and when she gotto my abdomen, I mean, the
blood drained out of her faceand she said, you have a huge
mask . And she said, didn't youfeel that? And I said, well, I
(08:53):
just thought it was weight i'dgained gained from menopause.
And I later felt really stupidbecause I did notice it wasn't
as soft as like fat, it wasmore dense. And so that should
have been, you know, thatshould have been a clue, but
you just don't, but
Speaker 3 (09:09):
At hindsight is 2020. Right. You know, it's ,
um, I, I never, anytime I meetpatients who share their story
like this, I I always start offwith reminding them that it's,
it's not your fault. Nothingwrong. You did. I mean, this
is, it's human nature to thinkof other things and not think
of the worst. Nobody wants tothink they have cancer . So we
(09:31):
think of everything elsethat's, you know, fixable and
easy. Right. Um, but , um, um,but yeah, it's, it's tough.
It's very, very challenging.
Speaker 2 (09:43):
Well, what is the difference between the symptoms
of ovarian cancer and symptomsof other gynecologic cancers?
Speaker 3 (09:50):
Yeah. So , um, as I mentioned, ovarian cancer,
these are very vague symptomswith the other gynecologic
cancers, particularly let's sayuterine cancer or endometrial
cancer, this is , uh, the,actually the most common one
that we see. You have vaginalbleeding, right? Uh ,
particularly post-menopausalbleeding. Right. So any blood
(10:12):
after menopause is not normal.
Right. And so the minute yousee that drop of pink brown ,
um, or heavy bleed, it's not ohmy period coming back. It needs
to be worked up. You know,there's no telltale sign like
that for ovarian cancer.
Another cancer that we dealwith is cervix cancer. Cervix
cancer is , um, typically youcan still have abnormal
(10:35):
bleeding, but a lot of timesit's diagnosed based on a
series of, let's say, abnormalpap smears , um, that then show
abnormal cells and then abiopsy. Right. But more
advanced stages of cerv cancercan present with pelvic pain,
pressure, back pain, legswelling, bleeding, urinary
discomfort. So kind of a littlecrossover in symptoms. Um, but
(11:00):
I will say those cancers havemore telltale signs than you
would particularly see withovarian cancer. With
Speaker 2 (11:06):
Ovarian. Uh, and, and you should wait, you know,
when you start feeling anythingor seeing anything unusual that
you're not sure about, youshouldn't let it go more than
how long, couple of weeks or,yeah.
Speaker 3 (11:21):
I mean my and my rule book, the minute
something, especially thevaginal bleeding, let's say
that to me is, is fear . Ifit's kind of abnormal for,
let's say you're a menstruatingwoman and now you all of a
sudden have irregular menses orperiods that have never
happened to you before you callyour doctor 'cause you don't
know what their schedule is,they may have
may be booked up. Right? Right. And so you might , they'll
(11:42):
make that call and get on theirschedule 'cause they may not be
able to see you for another twoto four weeks. Right. Right.
Speaker 2 (11:48):
Um ,
Speaker 3 (11:48):
And then , um, but for example, if these vague
symptoms of ovarian cancers wedescribed, yeah. If it's two
weeks of kind of thispersistent symptoms that you're
just, they're just not goingaway. You've tried certain
remedies, you gotta make thatappointment. You gotta call the
doctor, get it checked out.
Speaker 2 (12:06):
And is there any type of early , uh, detection
screen at the doctor's office?
Like pap smear membrane ? Right? No.
Speaker 3 (12:13):
Yeah. You bring up pap smear. So pap smear , uh,
is purely designed to screenfor cervix cancer. Uh, I think
that's a misconception and amisunderstanding. Um, you know,
I think pap smear for a longtime was synonymous with , oh,
I'm going for my GYN checkup.
I'm going for my pap smear. Youknow, that's gonna, that's a be
all end all screening foreverything. But it's
(12:34):
unfortunately not. It's purelyjust screening for cervix
cancer. And it's an excellenttool for that. But it doesn't
screen for ovary cancer doesn'tscreen for uterus, cancer
doesn't screen for vulva canceror vaginal cancer. Right. So
it's purely detecting on thecervix. Now, could it , could
that test pick up some abnormalcells that maybe trickle down
from, let's say, the uterusonto the cervix? Sure. Have we
(12:56):
diagnosed uterus cancer from apap smear? Sure. But that's not
designed for that. We haven'tyet diagnosed ovarian cancer
from a pap smear. Um, butagain, if little abnormal cells
kind of trickle down that don'tgo along with the cervix, then
that clues in the doctor to,Hey, let's do more testing. Why
is this happening? But it'sreally not a , it's not a
(13:17):
screening test for ovariancancer. And so we really don't
have a screening test forovarian cancer, making it that
much harder to detect thisdeadly disease.
Speaker 2 (13:27):
This may be a stupid question, but it certainly
won't be the first one I'veever asked. Um ,
there any reason to get a papsmear after you go through
menopause?
Speaker 3 (13:39):
That's a great question. I love this question.
And so the answer , um, is yes,because guidelines state that
up to age 65 you should begetting pap smears. And
depending on your history, likeif you've had all normal pap
smears your whole life, HPVtesting, 'cause that's part of
the pap smear and screening forcervix cancer is HPV human
(14:00):
papillomavirus testing. Um, ifall that's been negative your
whole life, you get to 65, youcan have that one last pap
smear and say , and see youlater , um, see you later to
pap smears, not see you laterto your gynecologist. You
should still go every year foran exam. 'cause you still have
a vulva, you still have avagina. And if you still have
those internal organs, they'rethere and something could
happen. And I think thoseyearly visits , um, are helpful
(14:24):
because you may bring up asymptom or, or a sign that you
may didn't think of, think wasanything, but then your doctor
gets clued in and starts aworkup, then may find something
early as opposed to late stage.
So definitely keep going. Iwould tell patients, keep going
to the gynecologist.
(14:45):
but keep gonna the gynecologistgo say hi, make it a social
visit.
Speaker 2 (14:49):
That's , that's very good information to know.
a, a big , um, telltale sign.
Um, for anyone who doesn'tknow, normal range is zero to
35 and mine came back at11,000. So , um, that is
(15:11):
something we continually check.
And when I had my recurrenceafter the exam, everything
seemed fine. And then , uh, I,they did the blood test and it
came back like four something.
And that was reason forconcern. And then we thought,
just to make sure it wasn'tmostly elevated because of it ,
(15:31):
tell me if I'm wrong, but myunderstanding is that , uh, ca
1 25 measures inflammation inthe body and other things can
cause it to be high, and that'swhy it's not actually used as a
marker. Is that correct?
Correct.
Speaker 3 (15:46):
Um, it's , um, it's a great test to have once you
have the diagnosis of ovariancancer and like you had
correlated with the disease,went down with treatment, came
back up with recurrence, greatmarker. But for screening the
whole entire population, yousend the C 1 25 and everybody,
you're just getting numbers allover the place. People getting
nervous and maybe havingindicate surgeries. You know,
(16:10):
there's no biopsy of the ovary,just like, let's say breasts.
Breasts, you have mammogramsand if you see something
abnormal, you can do a littleneedle biopsy. The breasts are
easily accessible, ovaries aredeep in your pelvis, bowel and
intestines are kind of floatingaround all over , uh, all over
that area. So you can't juststick a needle to poke at the
(16:30):
ovary. Um, and so what it meansis if you find an elevated C 1
25 or , uh, then you takesomebody to an abdominal
surgery, some kind ofexploration that may not have
been indicated and you'reputting them at risk for
complication.
Speaker 2 (16:46):
And with, with me, I had a CT scan after it came
back elevated at four somethingand the CT scan was negative.
Mm-hmm
doubled. Yeah . And so thenthey did a PET scan mm-hmm
Speaker 3 (17:05):
Right. Yeah. So you had a very isolated early
recurrence, small volumedisease that Yeah. That ca 1 25
was, it was rearing its headsaying how , you know,
something's happening, but itwasn't big enough disease to be
at 11,000 like it was when youfirst presented. Yeah .
Speaker 2 (17:22):
Yes. So that , that was very beneficial has been
for me. And , uh, yeah , youexplained there's, it doesn't
always work that way.
doctor can kind of guide you onhow much of a , an indicator
that is for you personally,correct.
Speaker 3 (17:39):
Absolutely.
Absolutely. I think that's ,um, really what we, what we do
when we're , um, sending thatblood test, sending imaging,
correlating everything. I tellpatients, you know, let's
gather all the pieces of thepuzzle. Let's put everything
together, see what we find,then we can make sense of it.
You know, you may have anelevated C 1 25 , but your
(18:01):
scans show fibroids or a benignlooking cyst, which can cause a
ca 1 25 to be elevated. That'snot a reason for concern. It's
a reason for let's monitor,let's repeat, let's trend the
value. Just like in your case,they repeated the number.
Right. I always say also, onevalue is just one snapshot in
time. What is the trend doing?
(18:22):
'cause that trend tells youmore than just that one value.
Speaker 2 (18:26):
I see. Yeah . Well, as you said, misdiagnosis and
underdiagnosis is unfortunatelycommon for folks with ovarian
cancer. And if someone isdismissed by their doctor, but
symptoms persist, what nextsteps would you recommend
Speaker 3 (18:43):
That's , get another opinion, call a friend, find
out who do you know? That's avery good gynecologist, or a
gynecology oncologist sayingthat I'm having these symptoms.
I heard this amazing podcastwith Karen and Dr. David West
as part of Tina's wish. Youknow, I need, I need somebody
to really take me seriously,advocate for yourself. You
(19:03):
know, I think , um, you don'tneed to be a crazy person and
kick and scream, but reallyjust keep pursuing. Again, I've
had those patients as well. Um,some near misses, some
fortunately was just a , youknow, a benign ovarian cyst,
but it all the same symptoms,you know, and then we did
surgery, thank goodness it wasbenign. But then you have the
(19:24):
cases where unfortunately itwas cancer, but you gotta keep
pushing. You know, a lot oftimes, unfortunately, some
doctors may dismiss, dismissthe symptoms or do a
preliminary workup that'snegative and say, oh, you know
, it's just menopause. Youknow, or it's just urinary
tract, you know, we'll see youin a year, but if you know your
body, you know yourself, Ithink that's, you know it
(19:47):
better than anybody else.
Right. And so ,
Speaker 2 (19:49):
What I was gonna say. I mean, you, you have a
feeling. I mean, I've always,you know, since dismissing that
in the beginning to menopause,I've always kind of stayed,
tried to stay in touch with mygut and what I feel when
something is off. And I thinkwe all, if you tune in, you can
always, you know, have thatfeeling and you need to follow
(20:12):
it for sure. And be your ownbest advocate. So , and you
know, anyone can check out ourpodcast on how to advocate for
yourself as a patient for moreinformation. And , uh, you
know, in closing, Dr. DavidWest, I thank you so much for
joining us today and a hugethank you to everyone
listening. We hope you all walkaway from today's episode,
(20:34):
having learned something newand feeling more empowered in
your own health. And if you aresomeone you love , uh,
experience any of the symptomswe discussed today for more
than two weeks, please, please,please see your doctor and
advocate on your own behalf. Besure to tune in for the rest of
our ovarian cancer series as wecover what puts someone at risk
(20:57):
for ovarian cancer and how toreduce that risk as well as the
importance of detecting ovariancancer at an early stage. Thank
you so much.
Speaker 1 (21:14):
For more information about gynecologic health, visit
tina's wish.org/what to know .
That's tina's wish.org/w attT-T-O-K-N-O-W . And like,
follow or subscribe whereveryou listen to your favorite
podcasts.
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