Starting a relationship is never easy.
But in my case, things are a bit more complicated.
I met Jimmy online.
I'll tell you, Matt, it's very modern
now. I'm blushing.
Uh
I thought about how am I gonna tell him my secret?
I didn't want to tell him right away.
What do you think?
I think it's beautiful,
Jimmy. And I went out once and he types me into Google and the film comes up.
So he writes me an email the next day.
Oh, you didn't even tell me about in the family?
I thought, oh God, he knows. He knows and this is gonna scare him away.
I really like this guy
and then I wrote back. Well, I wasn't exactly gonna tell you.
I had a genetic mutation about making a film about it on our first date.
I,
you're tired.
Two. As one,
medical researchers have isolated a gene linked to a
type of breast cancer that runs in families.
Women having these mutations are also more likely to develop ovarian cancer
for women who carry the altered gene.
The major option is surgical removal of the
breasts and ovaries before the cancer strikes.
But would you want to know if your body contains a ticking time bomb?
Hey,
it's Joanna Rudnick and I'm here for a breast. MRI.
Hi, mom.
Hi.
Thanks
for being
here.
This is just all little insurances.
That's how I always felt about all my testing after I had my cancer.
It was like a little insurance policy. I would go and I would feel better.
They give you the information and they're like, don't panic, don't be neurotic,
don't be paranoid,
but your body can go off at any time and that pressure starts right away.
Our current estimate for the lifetime risk of breast cancer
in a woman with a BRCY mutation would be 75 80%
maybe 40% risk of ovarian cancer,
maybe 80% risk of breast cancer. There's something like up to an 87 or 90% chance
right now, I'm choosing surveillance
because the thought of removing my breasts and ovaries just seems crazy to me.
I would not recommend
deferring
the
oophorectomy.
Beyond age 40 there are many young women who are being advised to have a
oophorectomy at age 35. What about breast cancer?
Well, if you want to get your wrist to zero, it's surgery,
we know how effective mastectomy is, but we know what the other options are.
MRI Si think, mammography, ultrasound look,
it would be easy if we could say you're gonna get it and you're not,
your choices would be a lot more obvious.
How do I save these plants?
Don't show
this, please.
These need to come back to life.
My sister's reaction was that you and I haven't been together for very
long and that I'm gonna freak you out involving you in these tests.
So,
she's worried that we should just be sort of like
laughing and getting to know each other and having fun
and that this in a sense is just,
you know, not happy.
All of that I think is ridiculous.
Sorry. I'm terrible at holding this camera study.
You're not so comfortable, huh?
I think you, you have like a degree of paranoia about getting sick
and
you had a genetic mutation. Would you have a degree of paranoia?
And I think that
because of that,
I think
you
even more are contacting doctors and doing additional research.
See what the syndrome is when med students
think that they have everything
that they're studying.
You don't get worried.
You're not gonna worry unless something bad happens.
I'm not gonna
live emotionally as if
in, in a state as if you already have something that you may never
develop.
Mhm. So right now, I mean,
you know,
ask me tomorrow how I feel emotionally.
Are you taking a shower right now?
Yeah. And you can't film it.
Ok. But I'm gonna train you.
Ok, camera.
It's all for you. Good night.
Seriously, honey, you don't have to be here for this part
because there's still interaction with the doctor that comes later and
or else there's a chair for you right there.
I can stay here and hold my hand if you want.
This is cold gel. Ok.
All I can think about is my mom's ovarian cancer.
My mom survived
but most women don't.
I want to have kids.
Am I gambling with my life?
I
will
ask you some questions. That
should look great.
So I wasn't expecting to be nervous
Now I am.
First of all, everything is good.
Ok, no changes from the last time, which is what we wanna see.
So in terms of younger women like me, you know, what advice do you give patients in my
set
up line for me? I'm supposed to,
I'm sorry,
31. I don't know, you can measure that incredibly. Are you kidding me?
You, you're, you're almost pediatric
face.
So I've heard about a lot of women who have
the gene who immediately go and have both surgeries,
both their ovaries out
and the
that's an appropriate course of event,
especially for an individual like yourself, who's BRC A one
you wanna have kids.
So the surgical issue is out for now, question is now a timing issue.
You know, the numbers,
you've got about an 85 to 90% lifetime risk of developing breast cancer
and about a 50 to 60% chance of developing ovarian cancer.
General population has about an 11 to 12% chance of developing breast cancer.
And about a 1 to 1.5% chance of ovarian cancer.
Jesus Christ.
I'm not going anywhere,
but I'm more freaked out about
something happening to you.
I start thinking about losing you.
No, I know.
But when you know,
the doctor says you have a 95% lifetime chance of developing breast cancer,
I'm like she has a 95% lifetime risk of developing breast cancer.
Unless she has her breast removed.
You can't help but catastrophize when you hear something like that
and you know, it feels
awful
to
think about
what does that mean for me,
it's so selfish.
Does she only like me because she wants my babies,
you know, and she wants them quick?
Oh,
my gosh. So.
Ok.
Sounds good.
Shakespeare.
Thumbs up.
Right.
This is the facing
our
risk dot org
website and this is where I spend a lot of my time
here. We've got, um, I'm a ma anyone know a good breast doctor in Dallas for BM.
Follow up, uh BM, bilateral mastectomy. More comp
complications need support post op bras for silicon implants.
And I'm overwhelmed
by the amount of information there is about surgery
and I feel
like I've made the wrong decision.
Like all these women.
Yeah.
Have decided
to have surgery.
Yeah.
I wonder
is there a place for me here?
My grandmother was only 38 when she passed away,
so I never met her
and my mom always waited till that birthday and
she kept thinking this could be my year.
So it's always there.
She did get it at 50 died at 54.
I decided that I'm not gonna wait around.
Um,
the year she passed away,
I learned about genetic testing
and I had Children. I have beautiful twins. So I went for the test,
came up positive
and I had the prophylactic mastectomy. I feel so wonderful.
It was such a relief to get it over with.
I'd never got the cancer and I went from like an 85% risk to one
right now. I've chosen surveillance at this point. But um
I'll, I'll always be considering surgery and I'm thinking about that.
But right now I'm 31 and I'd like to have Children. So,
but I'm living proof that even now the
technology that we have doesn't always catch things.
I enrolled in a study of surveillance for my breasts,
MRI S mammograms. I
felt a lump in my armpit
and was subsequently diagnosed with stage three C breast
cancer and I just finished treatment on Friday.
So
I kept thinking about what Linda from the four support group had said.
And I wanted to know more about her decisions.
I decided to go to Boston to spend some more time with her.
Her cancer had metastasized
in the back of my mind, late twenties, early thirties was to have an prophylactic
oophorectomy.
But
I liked the way my life was my body was my sex life. I, I did not want to mess with
something as big as
removing your ovaries if I didn't have to.
And then I'll never forget the day that Lisa called me
and told me that she found a lump in her breast.
Lisa got tested for the gene.
She came back with the BRCA
one deletion.
So I went to my screening
and I had Lisa's BRCA
results with me
and they couldn't find my ovary.
It was a mass about the size of a softball.
Most likely malignant.
My body went off almost to the time that my mom's did
almost as if I was genetically programmed to get ovarian cancer at the same age.
She was,
I had finished up treatment and was feeling like myself again,
check my armpit.
I found a swollen lymph node. I went to my doctor
stage three C breast cancer
and
the breast cancer had made its way across the brain barrier and was in my brain.
I mean, it's
trel,
sometimes I'm angry
and the fact that she's going through this
and, and
there's nothing I can do about it. I feel helpless.
I worry about my daughter.
I think once you know, that you might have the gene,
I don't see how you can go through life, not thinking about it.
Curious what your mom told you about. You
know, when she, how did she explain it to you? Um, about
it.
She didn't really explain the whole gene thing to me.
She just said, basically, like,
my mom had it and I have it and there's a chance that you might have it and just like,
did that whole thing.
But I don't really,
she, I don't, she might have explained to me. I might have not been listening. But
right now I'm just like, trying to focus on like
passing high school,
you know, I'm trying to find like good college to go to and like all that stuff. So,
you know, this is 2005.
There has to be a better way of.
The only thing you can do is remove body parts.
My sex life before was wonderful. Now, it's like you,
you have no desire. I have no breasts. I have no hair. I have no ovaries.
I have no uterus.
I have no hormones.
It's, um, it sucks. It really does to say that. Oh, it doesn't matter is a lie.
It sucks.
But
in spite of how awful it is to feel less than female
being alive is what matters.
And
in retrospect, if I could have
turn the clock back,
I would have had all those surgeries.
It may not be the ideal life that you want, but it's life.
You don't mess with him.
Ok.
Hm.
Someone who is so afraid of having these surgeries and so
unwilling to consider them
at the beginning of this process. I'm just moving closer
into feeling that
um,
it's just not worth it.
I look at Linda and I just,
the breasts and ovaries and you can live without them.
I, I know I can't,
it's just,
I'll be back.
I got into this business years ago because it seemed to me that this was a way
to keep women from dying
of breast cancer and ovarian cancer. I am now. Absolutely convinced that is true.
You are not gonna die of ovarian cancer
and had this work not been done.
We couldn't say that
I knew that breast cancer rates were increasing.
So I thought if I can work with women from severely affected families,
perhaps we can figure out
what's inherited.
It took from
1974 to 1990
to have very good proof that there was a gene which I call BRCA one
that was responsible for a substantial fraction of
breast and ovarian cancer in these families.
When I found out I was
BRCA positive, I did not know how to tell people, right.
I don't have a genetic mutation, right?
You can start by saying everyone has genetic mutations. Mine isn't a gene.
We know about
all cancer is genetic.
Some of those genetic changes, the first ones are inherited,
we get one copy of every gene from our mother,
one copy of every gene from our father.
Your mutation would have come through your mom.
A mutation is something that has gone wrong with DNA.
The genetic code is a code of words, each of three letters.
My favorite examples is the fat cat saw the red dog run out,
you take out the fa of fat,
the rest of what you have in that sentence is now nonsense.
Meanwhile, a person with this mutation is completely healthy.
There is nothing wrong with having one copy
of a mutant BRC A one or BRC A two because you have the other copy
guarding
your genome in your breast cells and your ovarian cells.
All that it takes is for the remaining normal copy to be lost,
for a cell to begin to become a tumor.
That's why one is so
predisposed to the illness because the first mutation is already present.
Something that has been hard for me is how to live in the Preser
years, which I feel I'm in now at 32
without thinking every single day and every little pain and every little thing
is cancer.
Living with a predisposition is much like being a cancer survivor
because women who have had breast cancer and are now many years out
at one level should be able to go on
about their lives without giving it another thought.
But, but one doesn't,
it's always in the back of one's mind.
And I think that that question is a brand new question.
Hora
studying you.
My grandmother died at age 39 of
ovarian cancer.
I'm her namesake.
When my mom got breast cancer,
it ripped me apart.
No.
And so if I were to have this gene,
that would just be no wonder
if the question for me is how do I live my life with the fear that comes from knowing.
Then the question for Olga Flores
is how do I live my life with the fear that comes from not knowing.
My daughter is a gift from God.
She was 18 months when her dad left the house,
we had watched something on TV. And she wanted to know what it meant.
And she goes, does that mean you're gonna die?
She was, does everybody die?
Like, oh my God, how do I explain this to my six year old worrywart?
I have my own theory as to ovarian cancer and that might be all way off.
Where
is it?
Oh, gosh.
You know what? I,
I've heard it. I know.
I like to hear it. Lack of sex.
Yeah.
Betty, you have a memory of your mom putting on lipstick.
And it's funny because when I see you, Betty, you,
you always have your lipstick and Olga
always has her lipstick and it's like this thing that keeps going on in generations.
And I, I remember everybody said, oh, she's, it's just a cyst, it's just a cyst.
The doctor said
that if she survived the eight months
that she would be ok. Otherwise
I'm just really scared right now.
Everything they're talking about
is
just reminding me of my mom
when she went through cancer
and I was thinking of my daughter having to go through that if I have it.
Yeah.
So this
is your result,
Betty that we have here and the way that they break it down
on your BRC A one gene
we did find what's called a deleterious mutation.
This is what will test
you for Olga.
OK.
Yeah, I just confirmed everything I already knew.
Hold
on.
Oh, you may be negative
and then,
then I don't wanna hear it.
I know
I wasn't ready at 27.
I was so not ready.
I had no idea what this would mean.
I
still remember so clearly
when I got back from India and I called my sister.
You so
very nonchalantly.
Have you heard about the test? Did mom tell you about the test?
I'm thinking, what test?
How did this all start? You know, I've never really heard the story of how you guys.
Well, Lisa's really the owner of this.
I
started it. She did
and I didn't know if I wanted to know particularly, but
I wanted to know because I was gonna do something about it. If,
if I tested positive.
My sister, Lisa is a mammographer
and it's her job to diagnose breast cancer.
It was important for me to know
if I thought that we had the gene, I would have, you know, taken my ovaries out and
I had my three kids.
Well, Lisa was older and
assumed other than the fact that she had two daughters that she could handle it.
I was a little more concerned about you.
If it's a test that
tells you you can do something. That's one thing.
And if there's no fix, sometimes,
you know, information is
helpful and sometimes it's just worrisome.
So I called my mom
and
you sort of hear a little bit of that pain in her voice
but the attitude was very,
we found you in general counselor in New York near you.
Um, it's gonna be
something just routine, just like,
you know, going to the dentist.
I remember going in and seeing the genetic counselor
and looking at the, the tree that my mom had done,
I saw all this ovarian cancer
on my mom's
father's side.
I wasn't even brought up with the word cancer.
They didn't even use the word in my house.
And I'm named after both my grandmother
and my aunt who both died of cancer.
But I didn't realize that until we started doing the family tree. It sort of hit me.
And that was, um, that was quite a moment
for me to realize that
I left and for the next three weeks to a month, I didn't think about it
that I'd actually
got my blood drawn and sent it off to some laboratory.
Remember my mom coming into town and the night before us having dinner
and the waiter was saying something about how much we looked alike
we act alike. We look alike.
I have a lot of her DNA. It's obvious
when we went in there that day,
we were trying to be a beat. We were laughing like we always do.
We got there early
and I knocked on the genetic counselor's door
and she opened the door
and looked surprised that I was there already
and she said, I'm not ready for you
and just shut the door
in my face.
And I knew
that I was positive
and I just collapsed in my mom's arms
and I wasn't thinking about what does this mean for my future. I was thinking about
what does this mean for this woman who's a 15 year ovarian cancer survivor
to hear that she passed this on to her youngest daughter.
I was devastated that you had it. I was devastated to think that I could give it to you.
I could do this.
But
the thought that we could watch you and really be careful and probably
the two of us drove you crazy when I think about it now because
we have you in a program, you know, that's it.
And then we went and we had lunch
and I went back to work
and
that was it,
it was over
except it wasn't over.
Sometimes after you get the results, your mind goes blank.
Like after I heard the word cancer,
I know that. But it's, it's, it's, you know,
that's a little bit more dramatic news.
Julie Hankey carries the BRC A mutation and her three
daughters just tested for the mutation through Mary Claire King's lab
tomorrow.
They get their results.
The three girls just hearing from you all independently.
Like, what would, what would you do?
You think in the future if you had this and how would you all make decisions?
It does make a lot of sense to me
to get the ovaries taken out
once we truly decide that we're not gonna have kids.
And
once once I convince him that, you
know,
once
I get
discharge that,
I think I'd wait
to make any more serious decisions until I was like around 30
decisions on getting married and having kids.
Um I would definitely get my ovaries removed
and uh
it's probably in my mid thirties
and
estrogen, no estrogen,
a little bit of estrogen.
I still have a while
and
lord,
we just pray for good results today and just give us
your strength through all of this today in your name,
Jesus
and
peace, peace, peace, peace, peace.
OK.
Well, as you know,
you were all included in this project because your mom
Julie was found to carry this particular genetic mutation,
the RC A one gene.
And we have offered testing through our lab for the three of you girls
and we have those results to give back today and to talk about
um the results show that Stacy and kin you do carry the genetic mutation,
Rachel, you do not carry him.
Ok.
So that's what we have found.
And we're going to spend the next hours explaining why this is going to be fine
and that you are not going to have to go through what your mom has gone through.
Absolutely fine.
It's just,
this is going to be,
yeah.
And there's been a lot of anticipation. I know.
So,
so what I mean, obviously everybody's, I've been doing this 34 years.
I know.
I know. It's always a lot. What do you, what's, what's the main
thought going on
with you?
Uh huh.
I feel fine. It's just hard when you have sisters because
some people, like,
I know she probably feels guilty that she doesn't have it and that's why it's hard,
like,
individually we take it but then we know that others
have guilt or you feel sad for other ones.
Isn't
it amazing? Knowing? Cognitive one knows absolutely that it's completely chance
and it doesn't matter.
You,
were you really expecting to be positive Rachel or
sort of planning for it?
This is the opposite of what I want.
It's ok.
I
know.
Well,
it's life savings and that's the only way that I look at it and we knew going into this,
that we, you know, whoever had it
or whoever didn't have it or whatever it was gonna impact our family.
But Rachel, you cannot,
you cannot feel that way.
You just can't, I'm sorry. I know you do and your feelings are legitimate, but
I just think that
you will have to be
for
the burden on you is going to be substantial.
More than a few were mutation prostitutes.
No, she's
because she doesn't have an excuse to get her over.
Might have to
shoulder
off the hook.
This will be ok for all
you now
have control of the situation for the rest of your lives.
Did you have breast cancer or did you turn
you on to this?
What got me involved in this was that my best
friend died of cancer when we were both 15.
Um I didn't know she had cancer until she was dead
and I was so
angry and I thought something really needs to be
done about this to me every time a young woman stays alive,
I say, you know, go for it, Debbie. You know, this is, this is Debbie
that,
you know, she's not here, but you guys are carrying on her spirit
and she would have been fabulous.
There are really sort of three levels of medical opportunities going forward
and that can include
Hi.
Hi,
how you doing? Good. How are you? Good.
Ready to pack boxes, Jimmy,
you ready to pack boxes,
neurotic distortion of the creative process.
The interesting one,
you may learn a lot of things about me from these
books and to say you don't want me to move in.
That's true.
Do you meet someone and you think
this person is great. I wonder what it would be like to have a life with him.
Looks like they may die.
You know, when you find out
that she's got this mutation the next day after I meet her,
you know, this is a relationship where
if there's love, there have to be plans because of her health
and if there's not love,
then the relationship is gonna end.
That's,
of course, there's love. But I'm saying that's
there.
Love.
You have
to
understand where you have to understand where Joey's
coming from or how she's approaching me.
Is this the guy that I wanna have Children with and get married to or is that it
because I don't have time to play around.
All I want to do is move in with you and start living together.
Find a place for your furniture.
Yeah.
All right. It's a deal. That's easy
since my family's Ashkenazi Jewish and one in 40 of us carry BRC
mutations. It wasn't surprising that we were recommended for genetic testing.
Martha.
Hi. It's Joanna,
but lots of women carried BRCA mutations.
How are you doing?
Ok. I was a little
tired yesterday and had a long day over at Cook County Hospital. So
I met Martha Haley at a celebration for breast cancer survivors.
She's trying to change the fact that African American women are
five times less likely to be referred for genetic testing.
This is some serious stuff. Out here
when you're going home in a poverty stricken community
and you've been told you have cancer.
It's literally like, why should I even bother
before I had my second breast removed?
I was going for a six week check up and I get to
my doctor's office and I tell him I was just in a little fender
room.
He said, are you ok? You think you need to? I said no, I'm ok. I was a little shaken up.
I said, I'm ok. I'm ok.
I'm taking off my coat and he was like,
are you sure? Because your breast is on your back?
Came around.
I turned a little embarrassed. I said, oh, you see, it's ok. I move it around for you.
A
lot of you guys go over to the University of Chicago.
They're looking for especially African American
survivors to partake in that genetic testing
to just see, you know, like, is it possible that do you have the gene
a lot of us? You know, we do not see ourselves as carriers,
but is it
what they just take blood, take blood?
And that's it, that's it.
And if we can get them to be here
to do that blood,
how many will
agree?
I would love to.
I actually just made an appointment for my
genetic testing for myself because I wanted to be
able to at least find out then I can bring that information back to my daughter.
I have a 22 year old and to my sister's
mighty name,
everyone that's ready to receive, say, thank God
amen.
It's good to see you.
It's good to see you in
the
house of the Lord.
He said, according to your faith, be it done unto you.
Why Martha developed breast cancer? I would never know,
but one of us may develop it later. I don't know.
I don't know what the future holds in that department,
but do I worry about it? No,
if it's unknown to me, let it stay unknown. This is the day,
this is the day
me,
I'm dealing with what's right before me,
I'll make sure I go to the doctors, get my screening my testing,
but I don't think I'm gonna go a step further to set. Let's do some genetic testing.
Like I got time to worry about
what's happening. Oh, you're, you're predisposed to,
oh my God. I can't deal with it personally.
I think also it's a cultural thing.
I think the most black people don't go seeking stuff
because we got enough stuff to deal with it already.
So we don't go, we don't have the time to go seeking out more stuff.
All I can do is have faith that I will be here to see my grandkids and see.
Thank you all for coming to this Joining Forces conference
for those of you who don't know me. I'm sue Friedman.
I founded force based on the principle that
no one should face hereditary cancer alone.
We're prescribing hormones for a different reason
to women,
the breast
tissue.
And
the first thing is the patient has the mastectomy.
I've heard that women with
BRCA mutations account for only about 5 to 10% of all breast and ovarian cancers.
But being here makes me realize that there's a lot of us out there.
What do you
think?
So this is gonna be a calendar.
We want to showcase many different types of reconstruction
and what better time than this conference.
And
our goal is to show women who are happy with
their bodies and feeling good about themselves and celebrating.
We're gonna see Marsha's Playboy bunny pictures this time.
Anyway, we got these bunny costumes up in the attic.
I could probably sell them on ebay
pay for the rest of my chemo.
Wouldn't that be ironic?
Oh,
I think you're fabulous. You
know.
Ok. How do we got that? So what we gonna do it
time not throw him over my shoulder
ham.
So now we are doing for patients who are genetically positive for BRCA one or two,
a subcutaneous mastectomy
or prophylaxis, but leaving the nipple
pre-op
post up.
As soon as we finish the operation,
she basically the idea of a prophylactic mastectomy that lets you keep your nipple.
Sounds pretty good to me. What the surgeon does is make this amazing incision.
I have no idea really how they do the exact thing, but
he basically carves out the entire breast down to the muscle all the way up and around
as one piece of tissue.
So this all takes like three hours from
start to finish or including the reconstruction.
And I never need revisions. I don't have to wear a pet, a bra or anything and I
don't have to wear a bra.
Oh, my God.
That's
great.
You can't, you can't even see the scar on your
at
all. I mean, you really can't.
That's just amazing. You would never know. Can I feel them?
It is such
a
weird thing but they're warm.
I mean, it's like you can't, it doesn't feel like an implant at all
and it sounds like your husband can even see the difference.
He thinks they're great.
He thinks
they're really great.
So,
most of the patients are having these silicone natural looking breast implants.
Uh, we feel that these are safe and I think that they feel much more natural than
this is sort of water baloney and firm
here a little higher. Ok.
Let's try this one on the other side.
Ok. Is this even bigger?
It was a little bit bigger. Now, this is really gonna be a stretch.
This is kind of the fun part you feel.
Wow, that's really different.
I'm, I'm just so that's really a, so this is like ac cup.
This is probably a s on this side is probably ac
cup and the other one's maybe a full b small c,
I don't,
that doesn't look too big.
No.
And now I actually kind and
most women do go a little bit bigger to fill out that skin envelope.
I have to say if you're gonna do this, you know,
I never actually knew that I wanted breasts until just now.
There you go. But the cosmetics of it
as much as it can look good, it's not your own breast.
And you know, I don't have a crystal ball. Could you get cancer after? Absolutely.
When someone touches you, can you feel them touching you as far as, you know, full,
you know, sexual sensation and nipple?
I would give a bat of 60%.
I want to have the surgery
so that I can finally stop thinking about it.
But I'm terrified of making that decision without knowing
that there will be someone there
who love me anyway.
All the searching for answers and constant filming
was starting to take a toll on the relationship.
What's wrong?
I don't know. I'm just sad. I'm disappointed,
sad.
What do you say?
What's that about Linda?
What's that about
the US and the amount of stress? I think this
film and the mutation and everything is putting on this relationship.
I don't want our lives. I've told you this before. No,
I don't want our lives to be about the film.
What about cancer? What about cancer?
Never give up mama
as I was getting this too.
I was just crying and he was like,
are you crying? Because it hurts? I was like, no, it don't hurt. This is just a
really meaningful tattoo.
I mean, this is something that I always tell my, I always said,
never give up, never give up. And I said,
I
said, never give up. Where is she? She's at Burke
Cemetery,
but she never gave up
with
you. See, I don't, I don't
find that funny.
Well, Martha was waiting for her genetic test results to come in.
She found out that her cancer had moved to her bones.
If you guys find out that you did have some sort of a genetic link in the family,
would you do in
my test to my bro? Yeah.
If we find that it's in the family, oh, y'all can test me right now.
Pass it to my kids, kids or my kid, pass their kids kids.
I don't want to start that type of legacy now.
No,
no, no.
Right. And how is this pain?
The chest wall pain that you were describing that felt like uh
that pain was pressing really hard down on my chest.
And that was
uh Martha was working for a major breast cancer organization,
but when she got her third diagnosis,
they let her go.
I didn't have health insurance or income for over a year.
I had to wait for public aid to kick in and you know,
it was very difficult crucial moment
for me
to be forced to take something you don't want.
What I'm saying? I can work. Let me work. Please let me work.
OK. So we're gonna measure you over here again. This is called how
OK.
How can I fight you
when you insist on sneaking up on me?
How can I hide from you for everywhere I go, you try to find me.
How can I see myself as a woman
when you insist upon disfiguring me?
How can I look at my daughter, sister and friend and wonder,
are you gonna hurt them also?
How can I walk straight
when you try to ripple through my bones?
It looks very nice
and it's soft and comfortable.
Thank you. I appreciate it. God bless you. God bless you.
Even though you sneak up on me, I know you're there. That's why the fight isn't over
and I can still see myself as a woman
because it's not what you have done that define my womanhood.
I'm a woman by God's creation only.
And there's one thing you can't take for me
and that's the ability to be
a survivor.
Four weeks ago, you underwent genetic testing.
There were several possible outcomes. One is that
we could find a mutation in
the gene that may be responsible for your cancer.
One is that we find could find no mutation at all and one is that,
um,
we could have a more gray result like um where we find a mutation
and we don't know what the significance
is called a variant of uncertain significance.
And in your case, that's what we found.
What we don't know is whether or not you have
a change that may have caused your breast cancer.
Ok. Um And what shall I tell my daughter about this?
So it may be five years,
it may be 10 years down the road where we may actually know what this,
what your change means.
And this is one of the reasons that we encourage African American women
to undergo testing is that we haven't tested enough women to really know
about these changes.
The test is about $3000 and
um
our patients can't afford that.
We got a large grant from the Avon Foundation last year. Prior to the grant,
we were able to test approximately four women
through a financial assistance program
that uh myriad offers. And since the grant, I've been able to test over 100 women.
Um but the entire program will go away if we're not able to continue to get support.
Oh, say, can you see
by the dawn's early light?
What so proud
holy. We hail
at
the twilight. Last
screaming.
Tomorrow is a scary day
tomorrow. I find out my test results
and
so we already knew there was a BRCA one mutation in the family.
So you had that 50% chance to have it.
So we did the test and here's your result.
You, you did not inherit it. Oh my God.
Oh my God.
I know
it.
It's a miracle.
Praise the Lord.
That's great news.
Yeah, it is.
Oh, wow. Oh,
my baby girl.
And that's, that's right. Your daughter is not at risk at all.
I'm gonna
start
you.
Right.
Um, it's not a risk at all to have inherited this from you.
We don't even have to test her.
Great. Thank you. No problem.
Hi, my baby.
How are you?
I love you. And with
you.
Why are you crying mama?
Because I'm happy I got good news today.
If their news.
Oh, that everything's just gonna be OK.
That's all
I was feeling bloated.
It's a classic ovarian cancer sign. So I was really worried about it.
Uh Left ovary looks great. Uh Right Ovary and both of them look fine.
Looks better than my ovaries. Ok.
Well, I hope it looks better than your ovaries.
Thanks.
Huh?
I'm sending you out of here for
Shana
Tova.
I'm sending you out of here without a concern that anything bad is happening.
But I'm sending you out here to see you back in six weeks just to make sure,
I think that's, that will make me feel better.
Crying wolf being a BRC. A mutation carrier is just a different
issue than crying wolf. And because your mom had ovarian cancer,
that may not seem fair, but it's the reality of, of what
you and I deal with you personally and me professionally.
Um Have you seen women my age with ovarian cancer since you started this program?
Ok. This has not been a good summer. That's all I'll say,
both for diagnosis and demise.
So even in the young woman, sometimes you can't. The
youngest one who we lost this year was in her early thirties
and her biggest concern, the last time I saw her, which was two weeks before she died
was
I really wanna try to get pregnant.
Yeah.
Today I found it pretty hard to be a filmmaker,
Jimmy and I broke up.
I was desperately in need of a friend
and a sound person.
I think it's good
that you and that
as individuals, we're living lives now where we're not
engaged in battle.
Lots of complicating factors made us not
ready,
capable,
right?
For a partnership
right now.
I really think that
there's a large part of you that has not
come to terms with the reality of your mutation.
What do you mean by that?
Because you need to have some parts removed for your, for your own life.
You say it so harshly, like you've got to come to terms with your mutation,
like a scientist or a doctor.
Why is it that you perceive me
is completely being unemotional?
Because I'm telling you sometimes how it feels on
the other end when you say things like,
well, then you, you, but you have to have body parts removed or,
or you're being paranoid or,
you know, like when you're
Jimmy, I have it on film.
I don't wanna have Children with someone that I'm not in a loving relationship with.
Well, I think that's very smart. I don't want to have Children with someone.
I'm not in a loving relationship with either.
All right.
Now,
Linda would not want us to gather here and cry and mourn her passing.
Instead she would want us to remember her spirit,
her enthusiasm,
her love for life,
her grace during a very difficult ordeal.
To those of you. It never happens like it does in the fairy tales.
You are um
just scrambling to keep her pain under control.
Eventually it just happens and
you're left with
you.
Most people like don't really talk to me about it because they know that I'm,
I won't talk about it.
It's
like
thinking about it like she's gone on vacation.
Yeah.
So like,
I don't know,
there isn't really like,
I don't know,
I don't like this question.
Have you ever told anyone your age about the genes? Really?
I don't know, like kids at my age. Like we don't talk about stuff like that.
It's all about like,
you know, who got really drunk last night or like what the party,
what happened at the party and everything
like whatever is gonna happen is gonna happen.
Like there's nothing I can do to change it
if I'm gonna like do something about it, then I'll do it later.
She has made in the past some comments to some of my friends. But,
well, what difference does it make? I'm gonna be dead anyway at this certain age.
So that part,
you know,
uh,
is worrisome.
All right. Let's go.
If, at any point
this starts to bother her, then maybe that's the time to be tested.
If she comes out negative,
then she doesn't have to worry about it anymore.
And if she's positive
she's already worried about it.
Would you rather just not know about this whole thing at all?
Well,
to a point,
like, I wouldn't wanna know, like in great detail,
you know,
I don't know if that really makes sense. Makes a lot of sense.
You're taking in an awful lot of information and there's a lot of emotions
that go with that and I wanna know what you're thinking about for yourself.
Well, I think the hard, hardest thing for me is I wanna have kids and I broke up with
my boyfriend. It's been very hard on, on relationships.
So I'm struggling right now with
holding on to my ovaries, but
I'm definitely
scared,
Linda could never pull the trigger.
She just kept finding
more and more reasons why to put it off.
She's just described it as having her balls cut off.
That's Linda, that's
real.
And um sex is really that
go on and have as much as you can.
And you might end up with some kids taboo
and
it's only fair for people to know that those decisions you're talking about
are not simple.
Yeah. It's not that clear cut of just going and
having
stuff removed.
But I can tell you that I would have also come around
to accept
and we would have grown into a, a different
relationship
and, um,
and I think you're gonna be fine.
I'm gonna have the surgeries
eventually
put in time.
Now.
If not, I'm gonna come looking for you. Stay on me. That's
right.
You're like, it's 38 you're 30.
Joanna is 38 and two hours. Hey, you saw those ovaries
and I'm not gonna take no for an answer at this time.
Keep on me.
All right.
That's fine.
You tell
me
you to,
to as one.