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Talk Shows and
Stories : Featured
Talk Shows : Pregnant with Cancer
Pregnant with Cancer
Recorded October 8, 2002
Welcome and Participant Introductions
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Glenda Durham:
Hello and welcome to the American Cancer Society Cancer Survivors
Network. I'm Glenda Durham, your host. Today I will be talking
with three women who were diagnosed with cancer while they were
pregnant. As a cancer survivor myself, I am pleased to be your
host for today's conversation about: being diagnosed with cancer
during pregnancy; making treatment decisions; future pregnancies
or adoption; fear of recurrence and shortened life expectancy;
and listening to your body.
 Our first guest is Angel, a
30-year-old breast cancer survivor from Texas. Angel is married and has two
sons, one of whom is two years old and the other two months. Welcome to the
show, Angel.
Angel:
Thank you.
Glenda:
Your doctor found a lump in your left breast during your first
prenatal visit, when you were pregnant with your firstborn son.
You had a needle biopsy, which confirmed that you had cancer. You
underwent a mastectomy, and the cancer was found to be stage II.
You underwent five rounds of chemo while you were pregnant and
are currently finishing another round of 12 sessions. Thank you
for joining us today, Angel.
Angel:
Thank you.
Glenda:
Also joining us is Heike, a 36-year-old ovarian cancer survivor
from Idaho. Heike is married and has a two and a half-year-old
son. We're glad to have you with us today, Heike.
Heike:
 Thank you.
Glenda:
Like Angel, you were pregnant with your first child when cancer
was found. You were at your first prenatal visit and your doctor
thought your pregnancy seemed abnormally advanced. An ultrasound
showed that you had a cyst on your left ovary. The doctor
predicted the cyst would shrink after three months and
recommended that you have an ultrasound every two weeks to check
it. The cyst continued to grow rather than shrink. You declined
to have surgery, fearing this might hurt the fetus. When the pain
was too much to endure you agreed to the surgery, and the cyst
was found to be cancerous. Late in your pregnancy you underwent a
Cesarean section and had a full hysterectomy. You've also had six
cycles of chemo. Your baby is healthy, and you are cancer-free.
And thank you for joining our group, Heike.
Heike:
Thank you.
Glenda:
Our final guest is Angie. Angie is a 21-year-old colon cancer
survivor from Tennessee. She is single and lives with her 21-
month-old son. Welcome to the program, Angie.
 Angie:
Thank you.
Glenda:
You experienced some abnormal symptoms during your pregnancy and
went to your doctor. He referred you to a gastroenterologist.
This doctor did a sigmoidoscopy, which revealed you had a polyp
the size of a peach in your colon.
Angie:
That's correct.
Glenda:
And when you were six months pregnant, the doctors attempted to
remove the polyp, but they were unsuccessful because of the
position of the fetus.
Angie:
Well, they had already removed the polyp, and it was sent for
biopsy and confirmed that it was malignant. The purpose of the
surgery was to remove another part of the colon to see if it had
metastasized further into the walls. And they were unsuccessful,
because he [the fetus] was too big, so I opted to continue with
the pregnancy and just hope for the best.
Glenda:
You were 20 years old.
Angie:
20 years old, yes.
Glenda:
You underwent induced labor three weeks before your due date. And three weeks
later, the polyp and four lymph nodes were removed?
Angie:
Yes.
Glenda:
And one of the lymph nodes was found to be cancerous. You were
diagnosed with stage III colon cancer. And when your son was two
months old, you began eight months of chemo. And you're currently
in remission. Thanks for joining us today, Angie.
Angie:
Thank you.
Glenda:
Angel?
Angel:
Yes.
Glenda:
How did your diagnosis change your prenatal care?
Angel:
 First of all, I just want to
make one little thing--it's my second. I was found with cancer with my second-born
son, not my first.
Glenda:
Oh.
Angel:
Just to let you know. [laughing]
Glenda:
Oh, OK. We're still glad you're here.
Angel:
Yeah, me too. [laughing] It really didn't change my prenatal care
a whole lot, actually. I was high-risk anyway, for other reasons,
so we just kind of did everything the same as far as just the
prenatal care went. There wasn't anything really different then
from what I went through with my first son.
Glenda:
Well, did you have a team for your cancer and one for your
pregnancy, or did you have an OB/GYN oncologist?
Angel:
No, I had the--my OB was separate from my oncologist and then my
surgeon. Everyone was--every one was different.
Glenda:
Did the various healthcare providers coordinate the care
well?
Angel:
Yes, they did, actually. I'm glad that we were, we had the people
we--the doctors we did have, because when we first--when my
husband and I first found out about the cancer, we were thinking
"abortion," that I was going to have to get an abortion, there
was no doubt about it. But then, after talking to my OB and after
talking to my oncologist, we found out that we could indeed, keep
the baby and go through chemo. And I was just grateful that I had
the doctors that I did that helped us make the decisions we did
make.
Glenda:
Well, apparently it worked out very well.
Angel:
Yes, it did.
Glenda:
Let's ask Angie. I'm trying to imagine this. It's tough enough
being a parent, much less a single parent, but adding cancer to
the mix is very daunting. What's it like for you?
Angie:
 Well, it was overwhelming. I
think I was in a state of shock for a long time. Not only did I get diagnosed
with cancer, but two months before I had my son, my grandmother passed away
of cancer within a six-week time period of when she found out. So it was just
a big dose of the word "cancer." And I really had to look at the bright
side of things, because this--once I thought of something bad, it would just
bring myself down. And I have a very, very, very supportive family, a large
family, and they would have done anything for me, and without them, I don't
think I would have made it.
Glenda:
Well, we're glad you did. How do you balance all of this? You've
got work, you've got school, you've got raising a child?
Angie:
Once again, it really falls back on my mom and my dad. I live
with them. They provide childcare for my son. I'm a very strong-
willed person. This has given me such a different perspective on
life. I mean, in some ways I feel blessed because I would not be
who I am if I'd never encountered this. I would still be
immortal. I would still feel like nothing could touch me, that I
didn't need to worry about certain things until later on because
I had so much time. And now I realize every day is a gift. I have
a beautiful child who wasn't supposed to be here. He's my angel,
and I live for him. I know I want to make the best life for both
of us. Hopefully he'll realize what a lucky, lucky mom he has,
and I try to portray that to everybody. That it's not going to
bring me down, it's only going to make me stronger.
Glenda:
What about time for yourself? Do you have hobbies? Do you have a
social life? Do you--?
Angie:
I sure do. Yes, I do.
Glenda:
All right!
Angie:
I have friends that I've had since I got out of high school--
which wasn't that long ago, three-and-a-half-years--but I still
interact with them very often. I love to shop [laughing]--that's
one of my weaknesses--and softball. I play right now, softball--
or it just ended--but I've been playing softball three times a
week.
Are These Feelings a Reaction to Having
Cancer or a Baby?
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Glenda:
Terrific. You told us you worry about your son. What kind of
worries do you have?
Angie:
I just want to make sure he has
a decent life, make sure he has somebody to take care of him. He has a father
who is involved. I want to know everything is going to be OK, and he's not going
to be at all affected by what has happened. So, those are my worries. I just--I
worry he's not going to be protected all the time. And I want to put a shield
around him, because I know how vulnerable he could be to this hard world. And
it is a tough, hard world, but you've got to make it.
Glenda:
You have grown enormously through this.
Angie:
Yes, very much so. I was a different, different, different person
before.
Glenda:
Heike? I know you've had some fear of not being able to see your
son grow up.
Have you discovered ways to manage that fear?
Heike:
 I don't know. It kind of comes
and goes. I mean, sometimes it just makes me so sad, the thought that I might
not be around to see him grow up. It's getting a little bit better now. I feel
like I have been able to be there for his first two and a half years, almost
three years. But sometimes it still hits me, like when I see, I don't know--like
a six-year-old boy on a bike, and then I'm thinking, I go, "I hope I will
be around when Christopher is six," and see him ride his bike and all that.
And so, I mean, in some ways I do realize that I have to continue to live my
life and--but sometimes it does hit me.
Glenda:
Has your fear of recurrence been such that you've done special
things for your son so he remembers you if something happens?
Heike:
I don't know. You know, the weird thing is, since it is my first
child, I don't really know sometimes which things were caused by
the cancer and which things are just caused by motherhood.
Because I think some of the things, some of the worries, they
seem very similar for people--just when they have children and
they're very worried. I think we've been taking lots of pictures
and things like that. My husband has been really good about that.
I do think a lot about it, how precious he is to me and all that.
But I don't know how I would be feeling and thinking if I hadn't
had cancer, since it all came at the same time.
Glenda:
What some women have done--home videos of themselves with their
children playing together.
Heike:
Mm-hmm.
Glenda:
Or they write letters to them.
Heike:
Yeah, we've done stuff like that, too. We have this digital
camera and all, which we've been using a lot, and the video
camera. And yes--but we probably would have done that anyway, so-
-
Glenda:
Well, I must share with you a wisdom that was offered up by my
daughter. As she became a young woman, she said, "I now
understand the word 'parent.'" I said, "Oh?" And she said, "Yes,
it's short for 'paranoid.'" [laughter] Oh, my.
Angie:
I just wanted to agree with Heike.
I very much feel the same way about not knowing whether to blame emotions or
reactions or ways of life on the cancer or on the pregnancy. This was my first
so, you know, you don't know if just the pregnancy alone would have done this
to you or if it's a combination of both, or if it was just the cancer. So it's
really hard to decipher between all of them.
Heike:
Mm-hmm. Yeah, this is Heike again.
I mean, that was very much for me just this feeling of it being the worst and
the best of times, all at the same time. Which was really bizarre, even when
I look back at the time now, in some ways it was so wonderful having this baby.
And I felt my emotions were stronger than I expected, too. I mean, I always
felt that I would love him and all that, but somehow I guess it was stronger
than I expected it to be. But at the same time, it was also the most horrible
time, to go into the chemotherapy, and all the fear and all that. It was just
so weird having it all at the same time and not being able to separate things.
Glenda:
And you--somehow through all of this--decided to go back to work
while you were still pregnant and undergoing chemotherapy.
Heike:
[laughing] Yeah. In some ways, I think now, when I look back,
that it was a little bit crazy, and I probably should have taken
a little bit more time off. But I mean, on the one hand, I really
like my job and I felt like I wanted to go back. But it was also,
I just think--yeah, wanting this--wanting not to think about
cancer anymore and wanting this--a more normal life.
Glenda:
Did you have any problems with fatigue when you went back to work
during chemo and the pregnancy?
Heike:
No. I mean, I was exhausted and I was tired. It was partly also
because I'm a college professor, so I'm kind of like--with the
semester system, you see, I could have even started right then or
I could have made it another six months before. It wasn't really
practical to go back in the middle of the semester, so I started
work again when I still had two rounds of chemotherapy to go.
Glenda:
Oh, my. Well, I teach graduate school as well, so I understand
some of those pressures. You were a very brave woman.
Heike:
Well, thank you.
Glenda:
This is a very difficult situation that not everybody has
experienced. I'm going to start with Angel. You were one of the
people who went out on the Internet?
Angel:
Right.
Glenda:
And can you tell us about that? You found a Web site?
Angel:
I was trying to find somebody
in my same situation to talk to, to just, to know that it wasn't just me out
there being pregnant and having cancer. And I came across an Internet site.
It was called "Pregnant with Cancer." I got on it, and there really
wasn't much on the Internet site itself, but it said you could leave your name
and email and phone number, and someone called me the very next day. And I ended
up talking with this other lady that--she was almost with my same situation
being pregnant and having cancer and going through chemo. And we became very
good friends, and we talk on a regular basis. Just knowing she was there for
me to talk with and knowing that there were many, many, many women out there
that have dealt with this just helped me greatly through what was happening
to me.
Glenda:
Did you find any other sources? How did you find the Cancer
Survivors Network?
Angel:
Just surfing the Internet, also. I think I might have just looked
under the American Cancer Society and it linked me to that. And
then, talking with all the women on that page, I've gotten a lot
of information from them and became good friends with a lot of
them. And it's been just, you know, that you have someone you
could go to. Even if it's a dumb little question you have about
something that's going on, you ask it and you get so many
responses. And it's just so much support. It really helps.
Glenda:
What helped you the most?
Angel:
With?
Glenda:
With all of the things that you reached out for in terms of
putting your life together in the context of a pregnancy and
cancer. And what you learned on the Internet, and your
interactions with your friends, and with your medical teams. What
was it that helped you most to keep this all together?
Angel:
It would have to be my just being pregnant itself, which is kind
of strange, but I just feel if I wasn't pregnant, I wouldn't have
gone to the doctor, and then I wouldn't have found my lump. So my
inspiration through all of this is my little baby.
Glenda:
Well, that's a great unifying principal when you're trying to
deal with an awful lot of overwhelming things.
Heike:
I wanted to say something about
that, because I felt exactly the same way. I mean, on the one hand, very concretely
that my doctor said that my son probably saved my life, because otherwise we
wouldn't have found the ovarian cancer so early. I mean, it was only stage I-C,
and most often it's found much later, so he very concretely saved my life. But
also, later on, when I was going through chemo, I mean, just the thought of
Christopher and of his little hand stretching out for me and all that, I mean,
I feel like that really did carry me through it. And in some ways it made it
harder, because I felt like--I mean, I probably wouldn't have wanted to have
cancer anyway, but it made it worse to be sick and the fear of dying, but on
the other hand, it really helped me so much. And that was exactly the same feeling
I had.
Glenda:
What kind of support did you get from family and friends?
Heike:
I was lucky. I got a lot of support from my family. My husband
helped a lot. And I think that's probably one of the other
positive things, that he did so much, and he has such a great
relationship to my son now. I see it in so many other people when
they have a child, that so often the woman is the only one that
does all the work. I think partly because of necessity--and
again, I don't know how it would have been otherwise, but partly
because of this necessity--he just, he took on a lot. And then my
mom came out from Germany, and she stayed with us for two months,
and she helped to take care of Christopher. And just some other
people who have been incredibly helpful.
Glenda:
You're very fortunate. Angel, I know you had a lot of support
from family and friends. Can you tell us what that was for
you?
Angel:
My husband has been wonderful.
He's been the best that I could ever, I mean, I could even hope for. He doesn't
show his feelings all the time, but I couldn't even imagine being in his shoes,
either. And I have my mom here. I have all my family here. And they've just
helped so much with little things as, you know-- bringing food over to the house
after my surgery when I couldn't cook or do anything, to taking care of the
kids, to helping clean the house. I mean, just even the little things, people
don't realize that any little bit helps. And then just the support of my friends.
I just came in contact with a friend that I had in elementary school, and we
just started talking again. And it's like we've never been apart. And she's
just been so supportive through all this. And it's just been great.
Making Treatment Decisions While
Pregnant
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Glenda:
Was it difficult making treatment decisions when you were first
diagnosed?
Angie:
Very much so. I had doctors looking
at my pregnancy, not as "not important," but as less important, and
I have a whole lot of life ahead of me. So after they figured out that I did
have the cancer, and they either needed to hurry up and try to remove it or
abort, you know, Bryson, my son--and so I had doctors pushing me to go ahead
and abort. "And you're 19 years old. We'll abort when you're six, four,
five months, and then we'll do the surgery, and then we'll go from there. But
then you might live to see your 25th birthday." And those were comments
I was receiving. And then on the same hand, I was looking at--he was the entire
reason I found this out. The reason that this polyp, I found out I had this
polyp was because my uterus was growing, and it got so big that it made the
polyp rupture in some aspect and bleed enormously to make me go to the emergency
room. So, even being 19, I wasn't looking at it as, "Oh, I can have five,
10 more kids if that's my choice." I was looking at it as, "This is
my whole reason for living." If it wasn't for him--it was stage III-- there's
only four stages in colon cancer, so I know I would have died. So I look at
him, and I'm very thankful for that.
Glenda:
How did you go about getting enough information to make these
incredible decisions?
Angie:
I went to my church. I talked to my pastor. We prayed. I went and
looked on the Internet. I got involved with--on like "Baby Talk"
and different ones with just pregnant people. And then--I would
mention I didn't have enough intelligence to look up "pregnant
women with cancer," but I went to "pregnant women," and then went
through the pregnant women and tried to filter out who had
problems and who might have had--might have cancer. And I did
talk to a couple different people, and talked to one lady on the
phone several times. She was going through the same predicament,
and she ended up having her little boy and everything being good.
We have kind of drifted apart now, but--you know. I look to God.
I know that everything happens for a reason, and I know that He's
not going to throw me something I can't handle. So, those were my
reasonings. I was going to change my life and make the best I
could of it.
Glenda:
How about you, Angel?
Angel:
We had, of course, the same hard
decisions to make. My surgeon was my first doctor other than my--knowing I was
pregnant, the first doctor I went to was my surgeon. And he was telling me I
needed to fix, you know--I needed to come to the decision whether I was going
to have the abortion or not. I needed to make the decision of whether to have
a mastectomy or a lumpectomy. I needed to make the decision if I was going to
go through chemotherapy or not, because if I was going to, he wanted to insert
a Port-A-Cath. So we had all these decisions to make and not a lot of time to
do it. He gave me--I think we had like three days, just because I was pregnant
and the cancer was just growing faster and faster. Being pregnant, the hormones
were racing, so it was just feeding the cancer. So they needed to get it out
of me as soon as possible. And, talking with all my doctors, like Angie said,
going to church, asking God, "What do I do? Help me through this."
And I just couldn't imagine having an abortion, so that right there was out
of the question. And then having to deal with, well, do I want to keep my breast,
or do I want to lose my breast? I thought, well, it's either my life or my breast.
So if he needed to take my breast, take it. So that was really the decision
we made. We were going to go with the lumpectomy, but if they went in and saw
that they needed to take the whole breast, they would. And that's what they
ended up doing--which was fine with me, as long as I had myself here and my
baby. That's all that mattered.
Glenda:
How did your husband cope with that?
Angel:
He had the same outlook on it. He would rather have me around
than my breast. And he really, he was fine with it. He's like,
"No big deal." Actually, it doesn't--my aunt went through this a
couple years ago, and she said she felt a great loss. But I--with
that, with losing my breast, it's no big deal. There's too many
other things [laughing] going on to even think about that.
Glenda:
Does he get the "All-Planet Prince Award" for really being there
for you through the cancer and the pregnancy?
Angel:
Oh, yeah. Totally.
Glenda:
And the baby diapers, and all the good stuff?
Angel:
Oh, yes, baths and everything. [laughs]
Glenda:
Heike?
Heike:
Well, I was six months pregnant
when they found out about the cancer. I mean, they found the cyst earlier, but
of course I never thought it would be cancer. I mean, my doctor kind of mentioned
it: "Oh, and of course it could be cancer." But since I was always
healthy before, I just never got the idea that it really would be cancer. So
by the time I was diagnosed, I was six months pregnant, which means that luckily
abortion never even entered the picture. But we did have the decision to make
about how long to wait and how long--because at that point we didn't know yet
if the cancer had spread or would be spreading or anything like that, so that
was definitely the worst time of my life, not knowing if the cancer had spread
and what to do about it. So we talked to a lot of people, and the doctor recommended
waiting at least until the 32nd week to give the baby a better chance. And then
we actually decided to wait until I was eight months pregnant, which kind of
seemed like a compromise between the seven months that he recommended and the
full term, nine months. And so we decided to wait until 38 weeks, because I
just wanted to make sure that Christopher would be all right, because I thought
I couldn't deal with having a sick baby in addition to being sick myself. And
I'm very glad I made that decision.
Glenda:
Did any of you worry that somehow the cancer might spread to your
baby?
Heike:
I asked my doctor, but she said, "No. There's no risk of that."
So I guess I just trusted my doctor on that.
Angel:
I know that I didn't think that
the cancer was going to spread to my son, but my doctors have told me that--because
obviously he was exposed to the chemo--that he could still experience some of
the side effects, which could in turn be a secondary cancer. So my son could
also be--have that possibility also. So that's just what's kind of scary. He's
having to go see an oncologist now on a regular basis just to check him, which
is scary, but--
Glenda:
Much better than having the problem and not knowing to check
it.
Angel:
Exactly, exactly.
Angie:
I never really thought that it
would spread to my son, but I did double-check it with my doctors and they assured
me that nothing would happen. But now I have to be very aware and careful because
I know it's genetic. And I have--they've given me the suggestion of at least
half the age of--the age I was diagnosed. And I was diagnosed at 19, so that
puts Amino at 10 years old or less when he needs to get his first colonoscopy.
So I have to deal with letting my son realize that he's at a big risk for this
disease. And making sure that we eat healthy foods and have the right diet and
do the right precautions. And just let him know that it is a serious illness,
and that we're more likely than other people, and we have to not take it for
granted, and really look at it.
Heike:
Yeah, this is Heike again. I
was actually glad that my child was a boy, because obviously as a boy he wouldn't
have the risk of ovarian cancer. And my doctor also said that there's a slight
increased risk for cancer in general. But it's not as bad as if he had been
a girl, and so I'm glad about that.
Future Pregnancies and Adoption
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Glenda:
Now, I hear this rumor that you are adopting--
Heike:
Mm-hmm. [yes]
Glenda:
--a baby from China.
Heike:
Yes, we are. We've just started
the whole process in May, and yeah, I'm getting very excited about it. The fee
is finally about ready, about ready to be sent to China. And, of course, it
will still take a long time. It takes about a year from the time you get a referral.
But we've always wanted two children, and since now I can't have any more children
because they did a full hysterectomy, we were--we kind of were thinking back
and forth, and then we decided we should adopt. That was actually something
that I've been thinking a lot about already, before Christopher was born. At
the time, when I was trying to get pregnant, I had quite a few friends who couldn't
get pregnant, and some were going through like in-vitro treatments and all that.
And I always thought, "No, I don't want to do that. But, well, if I can't
get pregnant, I will just adopt a child," and so I've been thinking about
it for a long time. And, yeah, so now we've decided to adopt, and on the one
hand that's pretty wonderful, but on the other hand that has, I think, caused
quite a few of those fears to come up again. Because it is the decision to add
another child to the family which, of course, is a big responsibility and makes
you worry about what will happen if I won't be around for them. And so I think
that's why I'm, in some ways, dealing with it a little bit right now.
Glenda:
Yes, but you're focused on the future.
Heike:
Mm-hmm, and it is wonderful. I'm really looking forward to it. So
I hope that everything will work out and that I will be able,
will be allowed to adopt the child. And she seems so real
already. I mean, once you decide to do that--and she probably
isn't even born yet, but somehow it seems like she's already part
of the family.
Glenda:
Have any of the others of you thought about having additional
children or adopting?
Angie:
Me being so young having my first
child, I'm not going to totally knock out the idea of having another one, but
I do look at it as if it's going to have to be a very good situation. It's going
to have to just really run into me and hit me in the head. I'm not looking for
that, but if I meet the right person, and I decide a family would be in our
best interests, then I would. But I definitely think if I don't have another
child in the next, you know, eight, ten years, then I won't have another one,
because I have started young, and I do want to have some time for myself.
Glenda:
And Angel?
Angel:
Yeah. This is my second child
already, so I feel I'm totally blessed as it is, even though I would like to
have a little girl. But I'm not sure what the plan is for the rest of my treatment,
or if--because obviously my ovaries could be affected from the chemo, so I might
not even be able to have any more children. I mean, the possibility isn't totally
gone but we'll see what the future brings.
Glenda:
Tell us what your follow-up care consists of. Anything
special?
Angel:
So far, I've just been going to get my chemo and I of course will
see my oncologist and my surgeon. And so far, though I really
haven't had any like testing done, I don't know if the cancer--
this cancer was, did go into two of my lymph glands--so I don't
know if it's gone any farther than that. I haven't had any
testing done, so I'm really anxious to finish my chemo to know
what actually I'm going to have done, what further care. I know
she said I'd probably be on a long-term medication for a while,
but I'm just really not sure what's going to happen after my
chemo.
Angie:
After my chemo I expected--I
don't know--someone to just do a full-body X-ray scan, something just to double-check
and reassure me that everything was fine and dandy. And I really haven't--I've
been out of chemo for almost a year now, and the only kind of testing I have--I've
had done has been chest X-rays and CT scans. And that worries me a little bit,
because I don't know either whether or not, you know, it is--they do blood tests
and do my RBC [red blood cell] count and white blood cell count, and different
liver profile tests and things like that--but I'm still skeptical to think,
is there something else they can do? Can they just go in and take a couple more
lymph nodes and test them or what else should they do? But my remission is five
years. And I go every four months, and they just do like a well check, just
as if they would do at a regular family doctor.
Glenda:
Do your children have to be followed for possible late or long-
term effects of any of the treatment that you had while you were
pregnant?
Angie:
No, Bryson, he--the only thing he was exposed to was pain
medication. I did have surgery at six months pregnant and I was
under complete anesthesia and morphine and Demerol and just a lot
of pain medicine and hydrocodone. And they seemed to think that,
you know, he's fine and he's a normal, healthy baby. So I just
tend to listen to them and agree with them that he's OK. And he
wasn't exposed to chemo, luckily, and just the surgeries and the
pain medication.
Angel:
I was 12 weeks pregnant when
I had my surgery, and my son also was exposed to all that. So they said they
were going to follow up with that, but again, they think he's healthy. He does
have a little heart defect, but they don't attribute that to chemo at all, because
the heart is formed early, before I even started chemo. So that had nothing
to do with chemo, which I'm thankful for. And, like I had said before, he's
going to be followed by an oncologist, just because he was exposed to the chemo
along with Mama.
Self-Advocacy and Follow-Up Care
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Glenda:
Heike? How have you gone about advocating to get good
healthcare? What do you have to do to get the doctors to listen
to your concerns and act on them?
Heike:
In my case, the problem with
ovarian cancer is that you just don't know. I didn't really have any symptoms
or anything, so I feel like I got good healthcare, that there really wasn't
anything I could have done or my doctors could have done. I mean, in hindsight,
yes, it would have been better to do surgery earlier, because then the cyst
wouldn't have been so big, and it wouldn't have filled and all that. But, I
mean, that was my decision not to do the surgery earlier during the pregnancy.
But besides that, I really don't even feel like there's that much I can do,
which is kind of hard, too, because a lot of people are talking about like,
"Oh, yeah, you should take care of yourself and listen to your body, and
all that." But, in my case, I really don't feel like there is much I can
do. And I asked my doctor if there would be any signs, like if I should watch
for anything specifically for the cancer, if the cancer has a chance of coming
back. And what she said is just like, "Well, no, probably we will find
it from the blood test before you will feel anything if it were to come back."
So there really isn't anything. I mean, I was living pretty healthily before,
and I'm living pretty healthily now, but I haven't changed much, because I don't
feel like there's too much I can do.
Glenda:
I'm listening to you, and I'm hearing a lot of kind of
uncertainty in your voice.
Heike:
Mm-hmm. It's been a little bit frustration, you know? That I
feel like even, I mean, in some ways I think it would be easier
if I felt like, OK, that's what I can do. And then you can be
reassured that it won't be coming back or something.
Glenda:
Yeah, well, sometimes doctors can unfortunately be rather
unfeeling about things like this. A lot of people have to develop
just an amount of courage they never imagined, to confront the
doctors and demand that they respond to their concerns, and that
they explain the mysteries of some of these big words and what
they mean. I take it you haven't encountered that problem to any
significant degree?
Heike:
No, I've been--I've actually been pretty happy with my doctor.
So, no complaint here.
Glenda:
How about you, Angel?
Angel:
I apologize for my little baby crying. [laughing]
Glenda:
Oh, that's such a great sound, though.
Angel:
[laughing] I know, I love to
hear it, but--I've also had good healthcare so far. My doctors, my oncologist
especially has been really good in explaining things to me. I really--I didn't
even look at my path report until just recently. And after looking at it, I
had a lot of questions, and she sat down with me and discussed a lot of things
that I really didn't want to hear, but that she told me, and that we would just
work through it. One thing I do worry about is something that Angie kind of
was talking about, that once my chemo and stuff is over, I want to have--I'd
like to have every test imaginable to see if this cancer is out of me. I mean,
I know there's no certainties that it's gone forever or whatever, but--and that's
what I kind of worry about, that my doctor will say, "Well, you know, this
is what we normally do--maybe just a chest X-ray." And to me, I don't think
that's good enough. And so I will be encountering that later on this year, to
know what they're going to do and how I'm going to feel about it, and how I'm
going to go about demanding things. I just don't know what I'm going to do.
Glenda:
Have you, for example, considered taking an advocate with
you?
Angel:
No, I haven't. I haven't even thought about that.
Glenda:
Well, there's ways and ways. Let me just very briefly say that my
husband and I discovered that cancer is double-occupancy. We
never went into any of this separately. We were always
together.
Angel:
Mm-hmm.
Glenda:
But certainly if you contact the American Cancer Society, they
have cancer support groups and things like that.
Angel:
Mm-hmm.
Glenda:
You may be able to find a healthcare advocate in your support
group or through the Cancer Society; so that if you feel that you
really need someone to help you fully express this.
Angel:
Right.
Glenda:
You are entitled to take an advocate into those rooms with
you.
Angel:
Oh. Because I know when--I get very, very emotional. I mean, when
I was going through chemo, my doctor, my oncologist didn't want
me to have my fifth round of chemo because I was already getting
to be--I was 32 weeks already and I wanted it. I wanted that
chemo. And I started crying because she wasn't going to give it
to me. And my mom was with me, and she kind of told the doctor
what I was feeling, and she ended up giving it to me, thank God.
Because just peace of mind, I guess. I mean, it might not have
done any good, but I wanted that last chemo.
Glenda:
I understand. I truly do. Angie?
Angie:
Yes.
Glenda:
How have you dealt with follow-up care and advocacy?
Angie:
Well, mine was a very different
story than everyone else's. About the age of 12, I started experiencing symptoms
which I did not know has been linked to the colon cancer that I have. I had
fissures and blood in my stool, and I went to several different physicians and
got diagnosed with hemorrhoids and internal fissures. I even had a partial sigmoidoscopy
done as a child, and they found out that--and from what the doctors have told
me now, the polyp being the size of a peach--was probably in me at least five
years. So that puts me at about the age of 14. So now I realize that all those
were warning signs towards--but yet I recall the doctors telling me everything
was OK. And I'm 14, 15, 16, 17 years old, in high school doing my daily activities,
going to school, playing sports and whatever, not ever, ever realizing that
it would be linked to that. So now, you know, any little thing, any little bump,
anything that I don't feel is right or different, I make a statement, and I
let them know that I want something done. And I found a new family doctor who
does test after test for me if, if that's what I wanted. And if it makes me
feel better, he'll do it. And I think that's what I need now. If I need someone
to reassure me every time I have something that I'm uncertain about.
Glenda:
I can certainly understand that. And I think an awful lot of
cancer survivors experience that need, particularly the first
year or two. If it hurts, have it X-rayed.
Angel:
Mm-hmm.
Angie:
Right.
Glenda:
[laughing] I've been through that. It's a time of really coming
to terms with ever so much of your life and your future and your
priorities. And then you get an ache in your elbow or something,
and it's like, "OK, time to go see the doc."
Angel:
I just recently found a little
lump underneath my right arm that was totally uninvolved--in my uninvolved arm--and
it scared me half to death, and I had her check it out. I haven't had it X-
rayed or anything, because it's kind of going away, but it's still in the back
of my mind that--what if it's something? And I'm going to talk with her again
when I go see her again that maybe we need to get it looked at more, because
it's just in the back of my mind now.
Angie:
I agree with you. If you feel
anything isn't right or isn't making you comfortable--I mean, from what we went
through, you don't want to do it again. Just like people make the comment to
me: "You need to get out in the sun. You're so pale." No, I'm not
getting out in the sun. I don't want skin cancer. I've already been through
chemo. I know what it's like--
Glenda:
[laughing]
Angie:
--and I don't want to do it again. So, you know, you do take
precautions. You do look at life differently, and it's hard to
let other people see that when they haven't experienced it.
The Value of Sharing with Others
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Glenda:
How important has it been for each of you to find other women
like yourself in this situation?
Heike:
I mean, this has been really
important to me. Especially at the beginning, I didn't really know too many
people who have had cancer or who have gone through it. And it was only later
that I've found more people to talk to, and that's just so helpful. And that's
something--I think at the beginning, I was just so busy surviving, I didn't
go to any support group or anything because I simply didn't have time for any
of those things. It was more after a while, like after a year or so, that I
started feeling a few emotional aspects of having had cancer, and which was
kind of interesting, too. At first I was so busy on just chemotherapy and dealing
with my baby and then starting my job again that I really didn't deal with it
very well, and I think it only started later. But now I find it very helpful
to talk to other people, especially when you hear those good stories of people
who have had cancer a long time ago, and they're still fine and happy and healthy.
So those are, of course, the best stories to hear.
Glenda:
Oh, yeah.
Angie:
I also have found a very big
comfort in just telling my story. Just trying to find somebody who's had a similar
experience, not even a similar experience, but, you know, a life-threatening,
catastrophic accident, something that you can look and say, "Hey, you know,
the sun isn't just down on me. It's down on other people, too." When I
go to the children's hospital, I see children with leukemia and different things
and--it's not that it makes me happy or thankful, but you realize that it could
be so much worse. And you just have to understand and realize that you really
do have it good, whether or not you look at it. You live in America, you're
free and you're not having to deal with the daily things that everyone else
is. And now I've called the American Cancer Society. I'm doing things like this
and becoming an active member to do "Relay for Life." And just talk
about it and just make sure that "cancer" isn't just one of those
words where they want to say a terminal illness or something. You know, it's
a serious thing and people really, really need to know about it and all the
precautionary things that can be done to prevent a lot of it, because a lot
of it is preventable.
Glenda:
Congratulations! Great job! How about you, Angel?
Angel:
I've found that it's been very
important to me to find people with cancer, any type of cancer, just to hear
their stories--to know that, obviously, I'm not the only one. I've just recently--
it being Breast Cancer Awareness Month on the first of October--I went to my
first kind of going-out of having breast cancer I haven't gone to any support
groups. I haven't really like verbally talked. I've talked on the Internet,
and that's different than actually speaking and talking about it to other people.
And I went to a ceremony downtown, and I just cried the whole time I was there.
It was very emotional for me. And they even had me stand up. And I had my little
baby with me, and they all clapped for me, to say I had someone to live for,
my little baby. And it was just wonderful. I wasn't ready for any type of support
groups yet, and I don't know if I am yet, but that was kind of a start. And
it just made me feel so good to go out and to see people and to talk with other
people. It was just very--it was a very, very good experience for me to do that,
and I'm very happy that I did.
Glenda:
What I think I'm hearing is that both of you who have done this
feel somewhat stronger for having taken the public position on
the subject and shared? Is that true?
Angel:
I agree.
Angie:
Yes, very much so.
Glenda:
I know for me, doing work that helps other survivors and other
people is one of the things that makes my life meaningful. And
personally, I found breast cancer one of the most important
personal growth experiences in my life. But I was truly daunted
when I was called for this show, because what the three of you
have faced absolutely leaves me breathless. Can you--do you have
any special wisdom to share with our listeners? Because you have
been down a very, very special road, and the things you know,
people don't know. Who wants to start?
Angel:
I just wanted to say that when
I first went to my doctors and they first found my lump, the first thing they
said was, "Oh, you're too young." I was 29, and that was--everyone
was saying, "You're too young. You're too young." Well, obviously
I wasn't too young. And I just want to get out that you need to get to know
your body, and you need to know when there's something not right. And even if
you're young, insist on having it checked out, whatever it is, because it could
save your life. And that's just- -that, and letting people know that being pregnant
is one thing and then having cancer is another, and they both can happen at
the same time, and then you can end up with a wonderful little baby--that the
[only] option isn't abortion, and there's other roads to go down. And that don't
think it's just a dead-end road, because it's not. There's many treatments out
there that you can take while you're still pregnant. Just get information--all
the information you can--and make your choices from there.
Glenda:
Thank you.
Angie:
I also agree with her. Being
diagnosed at the age of 19 with a cancer that is on average for 65-year-olds
and older was just astonishing. And everyone just needs to know that cancer
has no limits, it has no age, it has no preference of race, religion, color.
It's there, and it's going to continue to be there. People need to help contribute,
volunteer, whatever they can to try to conquer it. I mean, we have scientists
day by day trying to figure out different remedies and treatments and different
things that can lengthen or cure diseases, and that's what we're really aiming
towards. We're not looking for a totally immortal life, we're just looking for
a life that can be lived a little happier, healthier and longer.
Glenda:
Well, what's happening out there in the real world is that women
are being diagnosed, particularly with breast cancer, at really
astoundingly young ages--in their early teens and its not huge
numbers, but it's significant. It seems at this point that we all
need to spend a lot of time thinking about our bodies, listening
to them, and supporting the organizations that help to conquer
these diseases and help us through them. Because it's not
something that's going to happen to your 85-year-old aunt, it's
happening to 19-year-olds, very young people, and that's a
cautionary sign for everyone.
Heike:
I don't think I have any great
wisdom or anything to share. I just--maybe like to enjoy your life and enjoy
your children. That's just something that I realize time and again, like how
precious my son is to me, and how much fun I'm having spending time with him
and enjoying that. I think that's something a lot of people sometimes lose track
of, because they're so busy doing stuff, that they don't realize how precious
not only little children, but also your own life is. And how wonderful--what
wonderful things you can do, and that's just something that has become very
clear to me.
Glenda:
On that wonderful note, I think we're going to close. I hope our
discussion has helped you with some of the issues in your life. I
want to thank each of our guests, Angel, Heike and Angie. You
have been so gracious for sharing part of your life with us
today. I hope that some of their experiences will help you think
and talk about your own concerns in healing ways. I encourage you
to listen to other discussions we have available on the Web site,
at acscsn.org or by calling 1-
877-333-HOPE. That's 1-877-333-HOPE. For the American Cancer
Society Cancer Survivors Network, I'm Glenda Durham, wishing you,
each of you, a great day, today and every day.
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