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January 23, 2023 28 mins

A conversation about the symptoms, diagnoses, and treatments for gynecologic cancers. Featuring Dr. Leslie Boyd of NYU Perlmutter Cancer Center and Dr. Kara Long Roche of Memorial Sloan Kettering Cancer Center. Moderated by Joyce Kulhawik, an Emmy Award-winning Arts & Entertainment Critic and Ovarian Cancer Survivor. 

To learn more about gynecologic health, visit tinaswish.org/whattoknow. 

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Episode Transcript

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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 Joyce Kwick . I am an arts
and entertainment critic. Ireview movies in theater, first
on television for about 30years, and now online on
joyce's choices.com. I'm athree time cancer survivor. Two
of those cancers are ovariancancer. My first cancer was

(00:49):
melanoma. 10 years later I hadovarian cancer. And a year and
a half after that, I hadovarian cancer again. I've had
chemo chemotherapy, I've hadsurgery, and I was misdiagnosed
every single time. Wediscovered my cancers early,
which is why I'm here today,because I insisted I was not

(01:11):
well, because I got secondopinions, because I found
doctors who would hear mebecause I trusted my body to
know that I was not well, eventhough people gave me a clean
bill of health and released mefrom the hospital. That's what
I've learned. We have to stickup for ourselves. We have to
pay attention, we have to seekinformation, we have to insist

(01:34):
on how we feel on gettingsecond opinions and on making
our way through the system. Andthen I was lucky enough to find
doctors who could treat me.
That is really what today isall about, about getting
information that will empoweryou . And getting that

(01:55):
information as early aspossible is so important
because the truth of yourdiagnosis, the truth of your
cancer will out the earlier.
You can face that and getinformation and insist and
don't be afraid to challengethe better off you are going to

(02:15):
be. And now we're gonna welcomeour panelists, both from New
York, Dr. Leslie Boyd,gynecologic oncologist from NYU
Langone's, Pearl Mutter CancerCenter, and Dr. Carol Long
Roche gynecologic oncologistfrom Memorial Sloan Kettering
Cancer Center. Welcome to bothof you, Dr. Boyd. We're gonna

(02:37):
start with you. What isgynecologic cancer? And please
define who a gynecologiconcologist is and what exactly
do they do .

Speaker 3 (02:49):
Hi Joyce. Thanks for these questions and thanks for
, uh, MCing this great event.
Um, gynecologic cancer arecancers that arise out of the
female reproductive tract. Sothe most common GYN cancers are
ovarian , um, uterine cervicalfallopian tube vaginal and

(03:12):
vulvar cancers not in correctorder, I will say. Um, and
gynecologic oncologists aredoctors who train in taking
care of women with malignanciesin those areas in the women's
reproductive tract.
Interestingly, unlike otheroncologists, most gynecologic
oncologists are trained to giveboth chemotherapy and performed

(03:34):
surgery. So we are trained totake care of kind of the
totality of the needs forpatients in these areas.

Speaker 2 (03:42):
And Dr. Long, I'm aware that there are many
differences among these kindsof cancers. So let's start with
incidents . Which of thesecancers is the most common
gynecologic

Speaker 4 (03:56):
Cancer ? Um , well , worldwide , uh, cervical cancer
is the most common gynecologiccancer. But here in the United
States , um, where women haveaccess to gynecologists and pap
smears , um, endometrialcancer, which is cancer of the
lining of the uterus is themost common , uh, gynecologic
cancer in this country. Um, andit is something that we see

(04:19):
every day in our practiceshere. Mm-hmm

Speaker 2 (04:21):
. And let's talk about mortality
rate, and I think I may knowthe answer to this question,
but which is the cancer, whichgynecologic cancer has the
highest mortality rate?

Speaker 4 (04:31):
So , uh, in the United States, the gynecologic
cancer that has the highestmortality rate is ovarian
cancer, actually. Um, it's notthe most common cancer, but it
is one of the hardestgynecologic cancers to treat
and cure because unfortunately,most women with ovarian cancer
are diagnosed when the diseasehas already spread , um,

(04:53):
outside of the ovary or thefallopian tube mm-hmm
. Um , into thepatient's abdomen. And so , um,
patients present , um, withadvanced stage disease, which
unfortunately is harder totreat and cure.

Speaker 2 (05:05):
And that's because it's so hard to find and
diagnose .

Speaker 4 (05:11):
Yes. Um, some of the challenges that we face with
ovarian cancer treatment arethat there are , um, very few
symptoms of ovarian cancer orfallopian tube cancer when it
is in its early stages. Andcurrently , um, we have no
screening test or earlydetection tests , which

(05:32):
reliably can find ovarian orfallopian tube cancer when it's
small and early.

Speaker 2 (05:38):
So , uh, that leads me to , uh, a question for you,
Dr. Boyd. Uh , how many of thegynecologic cancers actually do
have screening tests orscreening methods? Uh , you
know, and when I go to myannual physical, when I get a
pap smear, is that a goodscreening test for gynecologic
cancers?

Speaker 3 (05:59):
Pap smears are excellent screening tests,
especially when combined with ahigh risk HPV test for cervical
cancer. But cervix cancer isthe only cancer it's designed
to screen for. So unfortunatelywe're left without screening
tests for ovarian cancer, whichas we discussed mm-hmm
. Is a , is ahuge problem. Endometrial

(06:20):
cancer, although there's noscreening test , thankfully,
there's usually an earlywarning system, meaning that
you generally have abnormalbleeding. So although we don't
have a screening test for it,we do commonly find it
relatively early. Sounfortunately, really cervical
cancer is the only cancer forwhich we have a good screening
strategy.

Speaker 2 (06:39):
Right. And my mother actually was diagnosed with
endometrial cancer and she didhave an early warning and there
was some bleeding. Otherwise,there would've been no way for
us to even know. And theycaught that very, very early.
Uh , Dr. Long since cervicalcancer is the only one with
really an early detection test, uh, certainly it's very
important to be aware of allthe signs and symptoms of

(07:01):
gynecologic cancers. What aresome of the warning signs for
some gynecologic cancers thatwe should all be looking for?

Speaker 4 (07:10):
Um, that's a great question, and it's something
that I think every patientshould be aware of. Um, any
patient that has , um, abnormalbleeding. Um, so that's
bleeding outside of the usualmenstrual cycle pattern. So
irregular bleeding, irregularperiods, bleeding in between

(07:31):
periods or very, very heavybleeding , um, should always be
evaluated by a gynecologist.
Um, also any bleeding at all,even if very, very light or
scant after a patient has gonethrough menopause , um, should
be evaluated right away. And inmany cases , um, it is the

(07:52):
patients that presentimmediately for evaluation of
that post-menopausal bleedingwho were able to find uterine
or endometrial cancer when it'searly and very curable. Mm-hmm
. Other signs andsymptoms are things like
bloating, difficulty eating afull meal, pain in the pelvis
or the abdomen. Mm-hmm . Um, painful

(08:13):
intercourse, changes with bowelfunction or bladder habits.
Mm-hmm . And thena , another symptom that many
people don't know about is anyitching , um, or , um, or
discomfort on the vulva or thevagina. So if there's one spot
that's persistently bothersome, um, that can be a sign of

(08:33):
vulvar cancer.

Speaker 2 (08:34):
Very interesting.
Um, I know looking back on myown ovarian cancer, and I had
those cancers when I was prettyyoung, I mean 34, 35, 36, I had
almost no symptoms exceptbloating, frequent urinary
tract infections. Um, and onceI got so full, I couldn't

(08:56):
finish a meal and I eat like ahorse. So this was, you know,
these are things thataltogether might have suggested
this and even so it was veryhard to to diagnose, but I just
wanted to put that out therebecause these symptoms can be
really subtle. Um, Dr. Boyd,are there certain risk factors
for gynecologic cancers andwhat are there way , are there

(09:20):
ways to reduce those risks?

Speaker 3 (09:23):
Yeah, a again, one of the most effective ways to
reduce the risk of GYN cancersthat we have, you know, there's
a vaccine now that is effectiveagainst many , uh, subtypes of
HPV, which is the causativeagent of cervix cancer. So
cervical cancer, in addition tohaving an effective screening
tool, also has an effective ,um, way to avoid the cancer.

(09:46):
So, so that vaccine, we reallystrongly suggest that all girls
are vaccinated , uh, generallyages 10 and 11 prior to , uh,
intercourse so that they canavoid cervix cancer. Uh , later
in life at highest use, wethink that vaccine will prevent
about 75% of cervix cancers.

(10:08):
And in countries that have hada high use of the vaccine,
they've already seen atremendous decrease in their
cervical cancer , um, load. Sothat's , it can be effective if
used . Um, beyond that , um,other risk factors or , well,
family history is reallyimportant thing to talk about

(10:29):
in patients, certainly withovary and fallopian tube
cancers and in some uterinecancers as well. So for those
patients, certainly they can beassociated with genetic
mutations such as the BRCA oneand two mutations and several
others. And oftentimes thosepatients will have extensive
family histories with other ,uh, people in the family with
either breast or ovariancancer. That's something

(10:50):
important to know about.
Uterine cancer can beassociated with a different
genetic , uh, predispositioncalled lynch syndrome, and that
can cluster both , um,endometrial and colon cancer as
well as ovarian some othercancers less frequently. So
also an important thing to knowabout other risk factors.

(11:11):
Generally speaking, obesitytends to be a risk factor. Um,
but aside from that, those are,those are the most important.

Speaker 2 (11:19):
So, Dr. Boyd , I'm just curious about the BRCA
gene mutation as a risk factor.
So many people seem to havethat as a risk factor. Lots of
people are getting geneticstudies done, and we get a lot
of questions about that. Howmuch of a risk factor is that?

Speaker 3 (11:37):
Yeah, so the BRCA one and two gene mutations, and
there's actually some othermutations that are related,
make up about 15 to 20% of allepithelial ovarian cancers. The
cognitive ovarian cancer that ,uh, we are most worried about.
So clearly much more common toget a nonfamilial associated

(11:59):
cancer. But for those peoplewho have the mutation, their
risk of developing an o ovaryor fallopian tube cancer is
quite high. Depending on themutation, it can vary between
20 to 65% lifetime risk, andthat compares to a lifetime
risk of about 1.5% for thegeneral population. So we're

(12:20):
talking about a reallyextraordinary increase in risk
of developing these cancers.

Speaker 2 (12:26):
I'm understanding that there is a way to reduce
your risk of ovarian cancer ifyou've taken birth control. Is
that true?

Speaker 3 (12:35):
That is a great comment, yes. So being on
hormonal birth control, anytype for a minimum of two years
and preferably to at least fiveyears, once you hit five years,
you reduce your risk by about50%. And that's true even if
you have A-B-R-C-A one or twomutation. So it's a common

(12:56):
strategy that we have for ourpatients who are carriers. We
ask them to go on oralcontraceptive pills so that we
know we can mitigate this riskfor them.

Speaker 2 (13:07):
Who knew, honestly, when birth control first came
out, we all thought it mightkill us, you know , uh, and now
we find out it might actuallybe a really good thing in terms
of ovarian cancer. At any rate.
Uh, and you know, in my case, Ifell outside of all of those
risk factors. There was noovarian in my family , uh, I

(13:29):
really healthy person, etcetera, et cetera. So while
those things are, and I don'thave that gene mutation, they
looked at my gene panel andsaid, , that's the most
boring gene panel we've everseen. So there's sometimes
there's just no explanation andwe just need to be watching,
watching ourselves. That'sright . Um , Dr. Long, how do

(13:52):
you treat gynecologic cancers?

Speaker 4 (13:56):
Uh, the treatment of gynecologic cancers is very
individualized. Um, meaning we, um, evaluate , um, lots of
different factors whendetermining a treatment plan ,
um, the patient and theiroverall health. Um, what organ
, um, has the disease and thenwhat type of cancer cell is

(14:18):
affecting that organ. So thereare different types of cancer
cells , um, that can be foundin these, you know, the
particular gynecologic , um,organs. And we also look at the
distribution of disease, andthat helps us to determine the
plan for a particular patient.
Very often, surgery is part ofthe plan , um, surgery to

(14:42):
remove any visible , um, orpalpable tumor or disease. Um,
and then in certain patients,additional treatments are
needed. Um, some medicaltreatments , um, like
chemotherapy or other drugsthat have been developed , um,
that target these cancer cells.

(15:02):
And then in some cases,radiation therapy. Um, so for
example, cervical cancer isvery often treated with a
combination of radiation andchemotherapy. Um, sometimes
also with surgery, ovariancancer is more likely to be
treated with surgery andmedical therapy like
chemotherapy. Mm-hmm .

Speaker 2 (15:25):
I think , uh, we should take some questions from
the audience. I know everythingyou've said so far has probably
made bells go off in somepeople's heads about what to
do, what to look for. So , um,we have , uh, a first question
here. Uh, and the question is,if I'm experiencing symptoms of
a gynecologic cancer, should Ifirst bring it up to my regular

(15:46):
OB GYN ? Um, at what pointwould I go see a gynecologic
oncologist? And what if thereis not a gynecologic oncologist
in my local community? This isa great question. I wasn't sure
who to go to when I was havingthese symptoms. I didn't, I
didn't know it hurt somewherearound my stomach. I didn't
know whether I should see myregular doctor, my ob , GYN or

(16:10):
somebody else. I didn't knoweither. Either one of you can
jump in there.

Speaker 3 (16:16):
Yeah, I'm, I'm happy to speak to that one. I think
it's a great question. I , um,it is reasonable to go to
either your primary carephysician or probably
preferably your gynecologist toget evaluated. Um, the one
comment I would make is thatpersistent symptoms deserve a
full evaluation. And sooftentimes patients will be

(16:38):
told, oh, don't worry, it'sjust a GI thing, or it's a
passing bug. And I would berelatively insistent about
getting a pelvic ultrasounddepending on, on the symptoms.
An ultrasound is, is , uh,relatively non-invasive , um,
relatively inexpensive andquite available. You should be

(17:00):
able to get one in most places.
Mm-hmm . So Ithink that's a perfectly
reasonable place to start. Ofcourse, after a good history in
physical examination mm-hmm . So I would
encourage people to be a reallygood advocate for themselves.
I've , I've had too manypatients, unfortunately, who
have been pushed off and toldthat they were fine only to

(17:21):
come to see me a year laterwith an advanced cancer. Of
course, that's, that's not thecommon thing that happens.
Right. But it does happen,unfortunately. So we have to
advocate for ourselves in theseinstitute in these times.

Speaker 2 (17:34):
Yeah , I, I amen to that. I have heard that story a
lot that , uh, I think it'svery important to insist when
things keep coming up, whensymptoms persist, and then
you've maybe gotta go to aspecialist and , and passed and
get a second opinion fromsomeone else who may be able to
zero in on that. Um , is thereanything you wanted to add to

(17:57):
that Dr. Long?

Speaker 4 (17:59):
Uh , I echo everything that Dr. Boyd said.
Um, uh, any symptom that islasting, you know, more than a
week or two and doesn't goaway, should be evaluated. Um,
and I completely agree that if, uh, a patient is told that
something is nothing, but theykeep having symptoms, that they

(18:20):
should feel empowered to , um,continue to advocate for a more
complete workup. Um, and youknow, it is difficult.
Gynecologic oncologists arevery, very , uh, numerous in
New York City. Um , but thereare places in the country , um,
and certainly the world wherethere are not gynecologic
oncologists. And I think , um,that, you know, communication

(18:42):
with the specialists or the,the OBGYNs in your area as to
how best to get the care thatyou need is the most important
first step.

Speaker 2 (18:51):
You know, you're making me think of one other
important point that I thinkcomes up for women, and that is
women often don't like tochallenge a doctor. And I
always say to people that agood doctor welcomes input,
welcomes second opinions willactually facilitate that for
you and make that happen. Um,and no one likes to really

(19:15):
challenge their doctor, butyour first duty is really to
yourself and your own health.
And I will say that if I hadnot challenged my doctors and I
love my doctors, but if Ihadn't challenged some of my
doctors, I wouldn't be heretoday. And that's the most
important thing. Uh , we haveanother question here, and that
is, should women considerclinical trials after being

(19:38):
diagnosed with cancer?

Speaker 4 (19:43):
Um , I can, I can answer that. Um, clinical
trials are, are a wonderfulthing. Um, this is where all
the new , um, and bettertreatments begin. Um, whether
there is an appropriateclinical trial for a particular
patient is a decision , um,that will be made between them

(20:03):
and their, and their treatingdoctor. Uh, so , um, a
gynecologic oncologist shouldbe able to guide patients , um,
whether , um, there is a , anadditional option other than
the standard treatment thatmight be right for them. Um,
and if there is , um, we alwaysencourage patients to consider

(20:25):
mm-hmm . Um,clinical trials , um, are not
always the right decision for apatient, but in many cases they
are. And again, in many cases,it's an opportunity to get
treatment and something thatmight be newer and, you know,
more effective.

Speaker 2 (20:40):
And it certainly is a way to help , uh, help
science in a sense. I mean, I,I , uh, would always welcome
the opportunity to be part of aclinical trial , um, because it
adds to the, the larger body ofinformation that's gonna help
all of us. So it's a way thatit's almost a way you can kind
of give back while you're doingyour own treatment. Uh, if I

(21:00):
may, we have a question hereabout cysts, ovarian cysts. If
you've been diagnosed with anovarian cyst, is that something
that could be a precursor forovarian cancer?

Speaker 3 (21:16):
So, I'm happy to talk about this. The vast
majority of ovarian cysts arebenign, meaning they are not
cancerous. And the ovaries,certainly in a pre-menopausal
patient, they make cysts for aliving. That's kind of what
they do. So, you know, havingnormal ovulatory function means
that you're going to have cystsin your ovaries. So having an

(21:36):
ovarian cyst is not necessarilybad. We are really lucky to be
in a time where imagingtechniques are so easy to come
by. And again, ultrasound Iwill point to. So we can use
how the cyst looks onultrasound to risk stratify
whether or not we need to beworried about that cyst. Again,
the vast majority of cysts willhave really benign looking

(22:00):
characteristics and usuallyjust need follow up unless
they're symptomatic because oftheir size. It's really a small
minority that have worrisomecharacteristics, which if
present should prompt thegynecologist to send that
patient to a GYN oncologist forfurther evaluation.

Speaker 2 (22:17):
Okay. So don't panic if you get diagnosed with a
cyst, it's absolutely , it'smost likely. Okay. It doesn't
mean you're gonna have cancer.
Okay. Good to know. Can, canyou tell us about some of the
hopeful research progressthat's being made right now for
treatments for early detection, uh, methods for figuring out

(22:40):
how to diagnose thesegynecologic cancers early and
treat them once we have them?

Speaker 3 (22:47):
Sure. That's a , a broad question, but happy to
discuss it. There are a lot ofnew imaging modalities that are
constantly being evaluated. Um,certainly ovarian cancer and
I'll say ovarian and fallopiatube cancer. 'cause often they
are, are kind of groupedtogether are, as we discussed
earlier, really problematicbecause we tend to find them

(23:08):
quite late in the diseaseprocess. And if we could
identify them earlier, we woulddo so much better. Our current
standard, which is ultrasound ,um, and, you know, and really
waiting for symptoms, we don'thave a good screening test for
standard patients or routinepatients , um, really is not

(23:29):
acceptable. So if we can getbetter technology, then
patients will do better. And ,and certainly that's in the
works. That's true both forimaging studies as well as ,
um, blood tests. So looking atdifferent tumor markers and
combinations of tumor markerswith imaging studies to see if
we can identify a trend thatshows that something is

(23:51):
happening kind of a , apre-cancerous state . We don't
, we don't seem to be able tofind that yet.

Speaker 2 (23:56):
And, and a marker would be something you might
find in a blood test?

Speaker 3 (24:01):
Correct. So right now we use a CA 1 25 commonly
as a marker to follow patientswith their disease. Um, not
everyone who has ovarian endfallopian two cancer will have
an elevated CA 1 25, but forthose with advanced disease,
about 75 to 85% of them will.
And for them it's helpful tofollow their disease course.

(24:24):
However, using it and screeninghas been far more problematic.
'cause again, it's much lesslikely to be elevated in early
stages and, and far less sokind of in a pre, there's no
pre-cancerous state that we'vereally identified well for
ovarian fallin tube cancer. Andif we could do that, then we
could intervene early. Mm-hmm .

Speaker 2 (24:44):
Got it. Are there any other , uh, research
studies that you're aware of,Dr. Long or any other kinds of
studies that, and advances thatpeople are making around
diagnosing gynecologic cancersearlier and treating them
earlier?

Speaker 4 (25:02):
Um, well, we , uh, we are using some novel , uh,
technologies. So for example ,um, some of the researchers ,
um, at our various institutionsare looking at machine
learning. So having a computerlook at fluid samples and blood
samples to see if, if thecomputer can do a little better

(25:23):
than we can by looking atpatterns of proteins in the
blood and in the fluid to tryto identify very, very early
subtle changes that might beassociated with , um, within an
early ovarian cancer orfallopian tube cancer. Wow. Um,
and in doing that, looking atproteins that we may not even

(25:43):
be able to name or identify,but if the machine or the
computer can identify thesepatterns, we may be able to
translate that one day to ascreening test in the clinic.

Speaker 2 (25:57):
Do either of you have any additional advice you
wanna share with us before weleave today? Something that
would help everybody out therewho's really wanting to take
charge of their gynecologichealth?

Speaker 4 (26:12):
Um , one thing that I think is very important , uh,
for all patients to know abouttheir own personal history ,
um, is whether they might be atrisk for carrying one of these
genetic mutations that wouldelevate their risk of
developing an ovarian orfallopian tube cancer , um, but
also other cancers like breastcancer or uterine cancer. One

(26:34):
easy way , um, to , um, lookinto your own risk of whether
you might carry one of thesemutations is to talk to your
doctor in depth about yourfamily history, not just your
parents and your siblings, buttheir parents, their siblings,
cousins , um, and to let yourdoctor look over your family
history to see whether thereare any worrisome patterns ,

(26:57):
um, whether cancer runs , um,on one particular side of the
family. Um, and then yourdoctor can help decide whether
you should have genetictesting. Genetic testing is ,
um, as easy as a blood test.
Um, and it can give you awealth of information about
your own risk. And that in turncan lead you to doctors who can

(27:20):
help you to decrease that risk.
And for gynecologic cancer,specifically, if we know that a
patient has a genetic mutation,we can help to counsel them so
that they can opt forindividualized risk, reducing
strategies and plans to helptake that very high risk that
Dr. Boyd was mentioning very,very far down to, to almost

(27:43):
average risk. Um, and so that'sjust the last thing is just
talk to your doctor about yourfamily history and whether
genetic testing is right foryou. Mm-hmm

Speaker 2 (27:51):
.
Great. Uh, I'm very encouragedby all of this as a matter of
fact. So just wanna say a hugethank you to Dr. Long and Dr.
Boyd for joining us , being socandid, so open, and so
available to all of us togetheras we take charge of our
health. Thank you so much.
You're on the front linesthere. And we , uh, we thank

(28:14):
you for everything you're doingto improve the lives of women.
Uh, I wanna thank everybody fortuning in today. This is just
fantastic to all of you, bewell. Take care, be peaceful .
Take care.

Speaker 1 (28:33):
For more information about gynecologic health, visit
tina's wish.org/what to know .
That's tina's wish.org/wH-A-T-T-O-K-N oow . And like,
follow or subscribe whereveryou listen to your favorite
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