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Talk Shows and
Stories : Featured
Talk Shows : Survivors' Perspectives on Breast Reconstruction
Recorded February 12, 2002
Survivors' Perspectives on Breast Reconstruction
Welcome and Participant Introductions
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Glenda Durham:
Hello, and welcome to the American Cancer Society's Cancer Survivors
Network. I'm Glenda Durham, your host. Today I will be talking to three
women and discussing their perspectives on reconstructive breast surgery.
As a breast cancer survivor myself, I am pleased to be your host for
today's conversation as we talk about: being your own advocate through
your diagnosis and treatment; dealing with the physical and emotional
effects of mastectomy; making choices about whether to have reconstructive
surgery; getting the information you need to make informed choices about
breast reconstruction; and the importance of support groups for both
breast cancer and reconstructive surgery.
Our first guest is Elaine, a cancer survivor from New Hampshire.
Elaine is 36, married, and has three children. Thank you for joining us
today, Elaine.
Elaine:
Hi, and thank you for having me.
Glenda Durham:
In 2000, you noticed a lump in your breast.
Elaine:
Yeah.
Glenda Durham:
Your doctor was not responsive to your concerns and suggested that the
nodes were related to a case of bronchitis?
Elaine:
Correct. Yes. I detected the lump, and when I called the office they said
to put a heating pad on it and that they thought the swelling and the lump
and the nodes were extended due to the bronchitis, but it never went away.
Three weeks went by, and then I just kept pursuing it more and more until
I actually got somewhere.
Glenda Durham:
So you insisted on being seen?
Elaine:
Correct. Yes.
Glenda Durham:
The doctor confirmed the presence of a lump.
Elaine:
Right.
Glenda Durham:
You insisted on an immediate referral to another doctor who gave you an
ultrasound and mammogram the next day. This confirmed that you had breast
cancer.
Elaine:
Yeah, what had happened--my original doctor, even though with the lump,
when I had gone to see him finally at the office the second time, when I
called and insisted to see somebody else--he did say, "Yes, you have a
lump." And then he wanted me to see a specialist, but wait another thirty
days, and it was around Christmas at the time, I said, "No." You know, I
think deep down I really knew what it was.
Glenda Durham:
Mm-hmm.
Elaine:
And so I just pursued and pursued it, and then he referred me to another
doctor who did--I mean even at that point my original doctor didn't even
ask for an ultrasound or mammogram--nothing!
Glenda Durham:
Oh my!
Elaine:
And then this other doctor, the next day I was in the hospital getting
both.
Glenda Durham:
Okay, you then had a mastectomy?
Elaine:
Yup.
Glenda Durham:
And that was followed by eight rounds of chemotherapy and six weeks of
daily radiation.
Elaine:
Correct.
Glenda Durham:
And you are also taking tamoxifen?
Elaine:
Yup.
Glenda Durham:
For five years.
Elaine:
For five years. Yup.
Glenda Durham:
Okay, Elaine, thank you for being here, and welcome to the program.
Elaine:
Thank you.
Glenda Durham:
Our next guest is Charlotte, a cancer survivor from Alabama. Charlotte is
a widow with two adult daughters. She is 68 years old. Welcome,
Charlotte.
Charlotte:
Well, thank you. I just passed five years, my five-year anniversary of my
mastectomy--
Glenda Durham:
Congratulations.
Charlotte:
--and just finished up five years of tamoxifen, which I'm happy to do. I
did not have any chemotherapy or radiation. It was about eleven months
after my mammogram when I felt a raised area in one breast. I immediately
called for a mammogram, and so when I went, the radiologist was very kind.
She came in and told me that she thought it was cancer and that she wanted
me to come back for a needle biopsy. So when the nurse came back in, she
said, "Well, we can do the needle biopsy in two weeks." And I said, "I'm
not going to wait two weeks to find out if I have cancer." So I was
referred to a surgeon who tried to do a needle biopsy, but it didn't work
out. But after all the tests, it was decided that I needed to have a
mastectomy.
Glenda Durham:
Now you've also mentioned, Charlotte, that you had two cases of skin
cancer?
Charlotte:
Yes, I've had a melanoma and a skin cancer.
Glenda Durham:
Well, thank you so much for joining our program today.
Charlotte:
Okay.
Glenda Durham:
Our third guest is Delores, who is 56 years old and lives in Georgia.
Hello, Delores--
Delores:
Hello!
Glenda Durham:
--and welcome to the discussion.
Delores:
Glad to be with you today.
Glenda Durham:
Your cancer was diagnosed in 1989, starting with discovering a lump during
a self-exam while taking a shower.
Delores:
Yes.
Glenda Durham:
And your first doctor said it wasn't anything to worry about and to come
back in six months?
Delores:
Yes.
Glenda Durham:
But you insisted on a mammogram, and then saw a surgeon, who recommended
surgery?
Delores:
Yes.
Glenda Durham:
Now, the extent of the cancer at the time of your diagnosis; you had a
mastectomy, chemo for six months and radiation for seven weeks?
Delores:
Yes.
Glenda Durham:
And after that you felt so scarred and depressed that you covered up all
your mirrors?
Delores:
I did, because it was hard enough losing a part of my body and dealing
with the chemo and the radiation and everything. I just wasn't ready to
look in the mirror to see myself without my breast. So it was something
that I felt if I would cover all the mirrors, if I walk by, I wouldn't
have to deal with looking at myself at that time.
Glenda Durham:
Well, that's a creative solution.
Delores:
[laughs]
Glenda Durham:
I understand the doctor told you, you were a good candidate for
reconstructive surgery.
Delores:
Yes. After I had finished all my treatments, I had tried to make my own
prosthesis, which did not work, and I realized that. At the time I did
not want to go around wearing a prosthesis all the time. So I was talking
to my family doctor, and he told me about a surgeon that does
reconstruction surgery. I had a talk with him; he watched me for about
three months and made sure this is what I wanted to do, to have this
surgery, and which I did in 1990.
Glenda Durham:
All right. And Delores, you're single, you have authored books about your
experience?
Delores:
Yes.
Glenda Durham:
And you are active in Reach to Recovery, Hospice, and Relay for Life?
Delores:
Yes.
Glenda Durham:
That's wonderful. Hey, welcome to the program.
Delores:
Thank you.
Being Your Own Advocate
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Glenda Durham:
Let's talk about being your own advocate through diagnosis and treatment.
What I've heard from all of you is that at one level or another that was
an issue! Elaine, it sounds to me like you had to be your own advocate
with your cancer experience. Please tell us how it felt to have to push
to receive care. Did this affect your confidence in the medical
community?
Elaine:
I figured as much nowadays with the doctors and the HMO's that are out
there, that I don't think they're as in tune with their patients. I mean,
I've had this doctor since I was 17 years old; I'm 36 years old now. I
had a long history with him, but I mean, I wasn't really surprised. Like
I said, just knowing how the medical field is, that they can't be
personal. I mean, when I was 17 and I used to see him, it used to be a
lot more friendlier, one on one, and then as the practice grew, you kind
of fell through the cracks. It's like a revolving door. So it didn't
really surprise me any.
Glenda Durham:
Well, let me ask all of you. What are the ways that a woman can advocate
for herself in a system that can be so intimidating and threatening and
apparently somewhat indifferent?
Delores:
Okay, may I say, for me, I feel that your body will talk to you when
something is wrong with your body. A lot of times we find ourselves not
taking care of the problems that we are faced with. And from what she
[Elaine] was talking about the doctors, the doctor that told me not to
worry about my lump, he is still my family doctor, because this is my body
and I knew something was wrong with my body, to go and take care of
that.
Glenda Durham:
How did you convince them to move forward?
Delores:
Because my mother died with cancer, that was number one for me. At the
time I had never heard of a mammogram, but I knew because my mother had
died of cancer and I had heard that there was a possibility of it being
hereditary. I knew he was stopping there. So I insisted and wanted a
mammogram and tests or whatever to find out what the lump is. You do have
to take charge of your body, because they will tell you, as I heard the
other two ladies say, they will tell you, wait and come back in two weeks,
a month or whatever. But we can't afford to lose that time waiting and
going back, because my cancer was in my lymph nodes. That meant it had
gone beyond my breast.
Glenda Durham:
Elaine, do you have anything to add to that?
Elaine:
Yes I do. Mine also; eighteen lymph nodes were
involved also with my breast cancer. My theory, as far as being pushy
with the doctor, is: I look at doctors as if they work for me--like I am
their employer. They are the employed. I'm paying medical benefits to
receive services and that's what allowed me to be more assertive. Even
though I put it off three weeks, and even that I regret now--that I wish I
had been more assertive in the beginning. But like I said earlier, I
really think deep down I knew, and because of the timing of the holidays I
kind of pushed it back and I went with, you know, hoping that that's all
it was, was the bronchitis and stuff like that. But I mean, we just have
to push. It's our body. We know our body, as the other lady was saying.
We know our bodies and they see us once a year, twice a year. I'm just
surprised that even though there's not much, there is family history, but
not--I mean, it's like long, it's like my great grandmother or whatever.
He still didn't want to pursue to have a mammogram even though I was 36.
That's something I think needs to be changed, too. Everybody's an
individual case. It's individual, and you have to take it, looking at
that particular--you can't just group everybody saying, "40 years old.
Okay, start here." You have to look at the family history and stuff like
that. So that's about what I have to say. [laughs]
Glenda Durham:
And Charlotte?
Charlotte:
Well, I made a mistake by not finding out all my choices before I had the
surgery. My surgeon, before the surgery, told me that I should have a
breast implant. He thought, and I just naturally felt, "Oh, that's
wonderful. Then I'll have two breasts that look alike." One reason that
I hurried up the surgery is because my daughter, who had been my caretaker
and had three children and lived out of town, was going on a ski trip in
about two or three weeks. So I went on and scheduled the surgery as soon
as I could, not asking enough questions, and I have been very, very
disappointed in the implant.
Glenda Durham:
Oh, I'm so sorry to hear that.
Delores:
May I say something? This is Delores.
Glenda Durham:
Mm-hmm.
Delores:
As she said about changing the times for the mammograms and everything, I
was 43 when I was diagnosed with breast cancer, and I had never heard of a
mammogram before, so I agree with her one hundred percent, especially if
there's a history of cancer in the family. And like I said, I have a
28-year-old daughter right now with fibrocystic breasts and she has
already had a biopsy. In my heart, I hate to see her going through this,
but we have talked about this. She is doing what she needs to do to make
sure that if it does wind up being cancer. We ought to have a head start
on it, because me having cancer, and talking to her about the cancer and
not being afraid to let your daughters or other family members know. All
my sisters, after they found out that I had cancer, then all of them went
and had a mammogram. So it would be good to keep in contact with your
family, sisters, nieces or whatever, and please to let them know, you need
to have a mammogram even though you're not having problems at a certain
age.
Charlotte:
I was well aware of mammograms probably twenty years ago, and started mine
back then, so I thought a yearly mammogram was the most important, but
self-examination is also very, very important.
Glenda Durham:
Boy, that's true. Now, how many of you had the feeling that you were not
only battling cancer, but also fighting with the very same people that
should have been helping you?
Delores:
For me, I have realized that with my doctors--and I have several doctors
now--that I have a relationship with my doctors. I accept them as a
friend as well as my doctor, and the reason I say this is I let them know.
One of the other ladies was saying that you were paying them to take care
of her. I look at it that I am paying him also, but it's good to, if you
can, develop a relationship with your doctor to where you can communicate
with him. If something is wrong, I can go to either doctor now and tell
them, "Look, I need this test done", or "This is going on", or "I don't
feel good", or whatever, and they will say, "Okay, Delores, this is what I
recommend for you. What would you like to do?" And this is the type of
relationship that I have with my doctors now, because I know, again, my
body. And also, I keep all my medical records myself, my blood work that
I have had done, everything, to where I can know what I've had done. And
this has helped me a lot, too.
Glenda Durham:
Well, I must say, in terms of my own experience, there's a tendency, I
think, particularly among women, to feel like we should be a lot more
polite than assertive, and what I learned in going through my treatment
was that trying to be polite and deferential in this sort of situation is
a little bit like arguing etiquette with a mugger.
Group:
[laughing]
Glenda Durham:
The cancer is too serious a threat. You have to simply step beyond where
you might feel more comfortable if you're encountering any resistance to
treatment, because if you don't, your life is in the balance, and you
can't allow etiquette to get in the way of that.
Elaine:
Yup. That's true. This is Elaine. Yeah. I don't understand why,
although I think it's sad that women are so passive. My mother is the
exact same way, and when on the outside looking in, it aggravates me,
because I'm very assertive. I'm not the type that stands there and
screams and yells. I'm very professional about it. I've seen other cases
that people, when they do get distraught and they're not getting
results--they're screaming. They're ranting and raving, which gets you
absolutely nowhere because then the doctor gets on the defensive.
Glenda Durham:
Right.
Delores:
That's true.
Elaine:
I wish there was a way we could teach this to women, like starting back in
high school that, yes, it's okay. You don't have to say, "Okay. Okay.
Yes, whatever you say." We need to educate ourselves, and if something
doesn't sound right, feel right, then definitely you have to bring it to
their attention, and if they don't do anything, then we need to pursue it
even further.
Glenda Durham:
Did any of you have family or friends who acted as an advocate for
you?
Elaine:
This is Elaine again. No. I did everything myself, once I found out. I
was diagnosed the day after Christmas. Six days later, with this new
doctor that I had and the surgeon, six days later I had a mastectomy.
I'm the type--and I started chemo shortly after--I just like to keep
things going--going fast. So I did everything for myself.
Glenda Durham:
Good for you.
Delores:
This is Delores, and I basically had to do everything for myself also.
And you know, from what she was saying, you have to take charge. But for
me, I have found through my writing and putting my thoughts down and
everything, this has helped me. And since my book has been out I have
gotten a lot of response from people that have had friends that have had
cancer, and they read my book before they talked to their friends, and
they told me that that helped them so much in responding to that person
and knowing what to say to the person or how to react to that person.
Sometimes you just have to listen to what the person is saying, so this is
my way of trying to reach out to other people, through my writing and
through my book. I figured this is a way of me reaching some young women,
older women, or whatever.
The Physical and Emotional Effects of Mastectomy and Reconstruction
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Glenda Durham:
That's marvelous. Let's talk about the physical and emotional effects of
mastectomy. We live in a society that places such importance on physical
appearance and vitality. What were some of the things that ran through
your mind when you learned you needed a mastectomy?
Elaine:
This is Elaine again. For me, I had absolutely no problem with it. My
husband had no problem with it. Breasts didn't define me as a woman. To
me,--its fatty tissue I had. It didn't even bother not once--he looked at
it right away. I looked at it right away. It was never a problem for me.
Not at all.
Glenda Durham:
Delores?
Delores:
For me, it did. Well, I was born with a birth defect. I had surgery from
the time I was 14 years old. To have to go through this type of surgery
and lose a part of my body, I can't say that it didn't bother me, because
it did. And my marriage, I didn't have a good marriage, as Elaine said,
that she had someone to support her, to love her for herself and not the
parts of her body. I didn't have that, and that was anxiety for me, but
once I had the breast removed, went through the chemo and everything, I
realized that I was glad to be alive.
Charlotte:
This is Charlotte. I really wasn't too upset about losing the breast. I
had a husband and two daughters that were very supportive. I was more
disturbed when they started this implant that ended up larger than I
expected, and then my husband died about a month before I was to have the
permanent put in, so my doctor would not let me have that operation
because it was so soon after my husband's death. And the plastic
surgeons, they were just so full they couldn't give me any time soon to
have the surgery. Well, my daughter went up there and she did everything
she could to get me an earlier appointment, which she did, and I was able
to have the permanent implant in, but since then it was such a
disappointment. My breasts are not shaped anything alike. And I'm an
older lady but I still like to dress nice, and it's like I said, it's just
been a horrible disappointment. The implant doesn't give. You lose
weight and you gain weight, but this implant is very rigid. You cannot
fit it into your bra. It's just a mound with a small nipple.
Glenda Durham:
Mm-hmm. I understand what you're saying. I had bilateral mastectomies
and I had implants, and they are quite stiff. I don't think I would be
comfortable wearing a bra with them at all.
Delores:
Well, okay, with my surgery--this is Delores again--I had reconstruction
surgery, and that surgery was where a muscle was pulled from my abdomen up
into my breast, and this is my own body tissue. That's how my breasts
were reconstructed. And I had an implant put in on the right side where
my breast implant that I had put in, it did rupture and had to be removed
and everything, but then I had saline put in. First it was silicone, and
now I have a saline in, and right now I am happy so far. It's been two
years. I haven't had any problems since, and for me, I don't regret
having the surgery. The reconstruction side of it, even though the breast
is there, but it doesn't have any feeling in it, but I feel, when I dress,
I just feel good by having the breast there. For me, I don't regret
having the surgery. I think that helped me.
Charlotte:
Excuse me. I only had one breast removed, which left another 34-C breast
sagging. The plastic surgeon did suggest that I have the lift, which when
you hear about it, it's not a simple thing for a breast that size, so I
said, "Well, I don't want to have that. I'll just wear a bra and then
I'll have two breasts alike." Well, that's a long way, because you can
hardly, I can hardly bring the real breast up high enough to look anything
like the implant. That is what's so uncomfortable.
Delores:
I had small breasts in the first place. So if I just had had this side
done and the implant not put in I would've been unbalanced. It was a
decision that, before I decided to have the reconstruction part of it,
that was discussed to me, I would have this part, and then I would have to
go back and do the implant, and I also had a nipple put on, too.
[laughs]
Glenda Durham:
They can do that!
Delores:
I know, I had all this done.
Charlotte:
I did too! They even wanted to tattoo it, but I didn't let them.
[laughing]
Delores:
Oh!
Glenda Durham:
Now, I let them tattoo mine and they look fabulous!
Delores:
I didn't go with no tattoo, now! [laughing] The nipple came from the
inside of my thigh, so that's how he did it. [laughs]
Group:
[laughter]
Delores:
But really, I don't regret--having it done. I went through some pain and
everything, and now I look at it when I go to where I feel good putting on
a bathing suit. Before, when I was going I'd wear a big shirt or
whatever, when it gets wet, it's like, oh, well, I don't have but one.
[laughs]
Elaine:
This is Elaine. I just want to put my input on that. I chose not to have
reconstructive or any other type of device. I basically just go free.
[laughs] I'm completely comfortable. I mean, I have my right breast. I
have, like I said, a mastectomy on the left side. In the beginning I was
fitted for a prosthetic because I didn't know how I would feel. I figured
once you get over the emotions--but that thing's never come out of the
box, and it's been a year now and I have no interest with it, and for me
it's just a comfort issue. I'm completely comfortable just having the
one. I think it depends where you are in your life, and how you feel
about yourself--your self confidence, and even the status symbol. If you
look in the magazines you always have these women--you know, voluptuous
breasts.
Group:
[laughter]
Elaine:
But to me, that was never, like I said--that was never a big deal to me.
I just chose not to do anything.
Charlotte:
Well, I wish I had thought about it longer, because I could have gone back
and had the implant later.
Glenda Durham:
Yeah.
Delores:
That part of it's true--but I basically had like a year. I would go in
and see him. I would talk to him. He would check me and everything.
When it was time for me to have it done, and I was ready to go to the
hospital, but it had to be postponed. And then I [laughing] really
started thinking maybe it wasn't for me to have done.
Glenda Durham:
Mm-hmm.
Delores:
But when the time came, I still followed through with it, and I had the
surgery done. This was for me, and as Elaine said, it's not for everyone.
But I feel good about it for myself.
Glenda Durham:
Let me ask all of you just briefly. Do you have a feeling that a woman
needs to have just a very, very long freedom of choice around making this
decision? That if it's reconstruction, we should have money available to
be able to take care of that? And if they choose not to do this, that
that's something--I mean a woman has a right after this kind of
disfiguring surgery to deal with the physical disfigurement issues in any
way that she feels is appropriate for her.
Elaine:
This is Elaine. I think the first thing women need to do is do it for
themselves. Don't do it for society. Don't do it for your spouse, your
significant other, whoever it may be. I think women really need to look
at themselves, and what do I want as a woman, not what does my husband
want, what does my boyfriend want, what does society. I think that's a
big misconception that starts back, way back in high school if not sooner.
That women seem to be here to please, be pleasing to the eye for everybody
else. [laughs] We need to really [do] what pleases us. We're going
through the surgery. We're going through the discomfort. What is good
for us? And I think women need to look at it and think about that for
themselves. Do it for yourself. Don't do it for anybody else or for
anything else out there.
Charlotte:
I think you're right. I did this for myself, thinking I would have two
reasonably similar breasts, and it didn't turn out that way.
Delores:
For me, I did it for myself also. Before having my surgery, as I say, I
talked to my doctor and also I did some research, and again, I probably
didn't do enough research. If I had it to do over again, I probably would
rethink it, because the first part of the surgery was not what I expected
on having done. But I will say for the women that are planning on having
this done, they should really do some deep, deep research or some
thinking. As the other two ladies have said, "What is the purpose?" or
"Why am I having this done?" Am I doing it for myself or my boyfriend, my
husband or whatever? But me, I did it for myself, and anything that comes
up with me now, I go on the Internet and I do research, and I find things
that can really help me. Even the medicines that I take, I research
it.
Elaine:
This is Elaine again. I just wanted to also put--when she was saying, I
think it was Delores, was saying about the research. I think the best
research we can get--you can go on the Internet, you can read books--but I
think the best source is the actual speaking or hearing people's
experience that have gone through it. I think a lot of times, doctors,
well personally for me, doctors I've talked to, they have never gone
through any of this. Everything they're telling me is textbook, is what
they've read. I don't think that--they don't have the insight as people
that have actually gone through it.
Delores:
Mm-hmm.
Elaine:
So I find the best research is just talking to people that have actually
gone through it, whether it be breast reconstruction or whether people
decide on chemo versus radiation, or both, or whatever. Try to get
contacts with people to be a vast resource. I know every case is
different also, so you can't really lump sum everybody, but just to get a
kind of feel for it, because you can research and research. I did that in
the beginning, and after a while you kind of drive yourself batty.
[laughs] I mean, there's just so much out there.
Delores:
Okay, let me say this. And when you say you were talking to someone,
whether they have gone through it, this and that, and I have done that,
but sometimes when they finish telling you what they have gone through,
it'll make you turn around and not have the chemo, radiation,
reconstruction or anything.
Elaine:
Right. Well, that's why I'm saying every case is different also. You
have to look at that also, because it's true everybody has different side
effects from it, and some people are stronger or have a different way of
healing, so yes, that's true.
Using Humor as a Coping Mechanism
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Glenda Durham:
I want to take a look at survival and coping
mechanisms, and particularly humor. Did you have any particular
experiences in which humor helped you get through the physical and
emotional effects of breast cancer and reconstruction?
Elaine:
This is Elaine again. I've always been a humorous person. This hasn't
changed me any. When I went through my chemo, I lost my hair. I got a
shirt that said, "Bald is beautiful." It had a picture of me and my
family on it. My daughter, who at the time was three years old, used to
love to put barrettes in my hair, and she was so disappointed when I lost
my hair, and I said to her, "That's okay. We can work around it." So she
ended up taping barrettes. I had pictures that I'd go out in the yard
with like thirty, forty barrettes taped to my head.
Group:
[laughter]
Glenda Durham:
That's lovely.
Elaine:
You know, anything, anything! I've always had my sense of humor through
the whole thing. That and my children is what keeps me going, you know,
they're so young, and my husband's support, and good support, you know.
I'm spiritual, and I have really good family support. You kind of weed
out your friends really fast. You find out who your true friends are. A
lot of people can't handle it, but you weed through that also.
Delores:
True. Very true.
Elaine:
Yeah.
Delores:
I find through humor, because I was even referred to as a bald-headed
Tweety Bird.
Glenda Durham:
A bald-headed Tweety Bird? [laughing]
Delores:
Tweety Bird, right. [laughing] In my writing I wrote about the bald-headed
Tweety Bird. I even wrote one about the doctors and the mammogram.
[laughter] You know, but I just put it in the opposite direction from
where we have our mammogram,--and from where, well, you know what happened
to them,--and I say I have no doubt a man made this machine.
Group:
[everybody agrees, laughs]
Delores:
If he had his you-know-what squeezed for a second, he would go without for
a long time. I think people is only humor--and that's the way I dealt
with mine, like in my writing doing poems. It's sadness, it's humor, and
I know for myself, too, that God is the head of my life. This has brought
me peace and comfort also.
Glenda Durham:
I'd like to share with you an incident that helped me make my decision
about reconstructive surgery. I was going back for my first day at work,
and I had a concave chest because of the mastectomy, and I had sent away
and ordered a bra and the prostheses, and I wasn't just sure how to put
them together. As I was raising the bra up so the straps would be on my
shoulder, the right prosthesis escaped and it hit the ceiling--
Delores:
Uh-oh!
Group:
[laughter]
Glenda Durham:
--and it cracked me in the head, and it rolled across the floor like a
lunatic thing [laughter], and I just stood there for a minute, and I said,
"All right, Glenda, you can either laugh or cry about this. What's it
going to be?" And I just, I cracked up laughing--
Delores:
Right.
Glenda Durham:
--because it was the best defense I had--and then I made the decision,
which I'm very pleased with, to go ahead with reconstructive surgery.
But have any of you had those kinds of incidents that just really put you
to it to make you decide how you were going to handle this?
Elaine:
This is Elaine again. Not for me. It, like I said, it was a no-brainer.
It's been pretty easy. I didn't have anything. I never looked for other
options because I was so comfortable being without the one breast. So it
wasn't an issue with me.
Glenda Durham:
Mm-hmm.
Delores:
Again, like I said, for me, I guess I have had so many problems in my 56
years, until losing this part of my body. Like I say again, it was for
me. And going through having the reconstruction surgery, I also got a
tummy tuck. So, hey, I got two things within one. [laughter]
Glenda Durham:
[laughing] We call that the mid-life makeover.
Delores:
Yeah, but you know, it was all good. But like I say, I do not regret
having this done. I think it would have been hard on me not having it
done.
Elaine:
Well, that's good.
Glenda Durham:
Now, Delores, you didn't even want to look at yourself. Was it easy for
you to make that decision to have reconstruction?
Delores:
It was not easy, because when he started talking to me about having that
surgery, he was explaining to me what he would do and how that would be
done. I should have asked more questions. And the literature that he gave
me, I read it, but sometimes I think I feel lost in la-la land, because
dealing with the cancer. I had lost my sister, the one next to me in
1988, and had this, the first of 1989 I was told I had cancer. So it was
like, okay, this is something I can do for myself to make me feel good.
And like I said, he gave me some months. It wasn't like I went in one
week and the next week I was in the hospital having the surgery. I think
eight months went by before I actually had the surgery, and I had time to
think about it, to pray about it, make up my mind whether to have it done
or not, and that's the way my doctor did. You know, it's not like, "Okay,
come on. Let's get it over. You want it done. Come on. We have it done
this week and have you out next week."
Charlotte:
I think you did the wise thing by thinking about it, praying about it,
discussing it.
Delores:
I did. And like I say, now I'm going into my thirteenth year.
Glenda Durham:
Congratulations.
Delores:
And I didn't have to take tamoxifen or anything like that. I lived the
thirteen years. So far I haven't had signs of cancer, but I do keep check
on myself, because I have some lesions on my liver that I found. It was
little bruises they call hematomas or something like that. But I still go
to my doctor and keep check on myself. If they tell me something is there
and he says, "Well, it's nothing to worry about." I say, "Well, I want an
MRI." I had an MRI, and it came back they were benign.
Charlotte:
This is Charlotte again. I have been so down on implants; I would like to
say that after mine was all over, the permanent implant was there, I
needed two sizes larger around bra. That's one reason why I ended up so
unhappy. I don't know how that happened. I told them I was a 32-C, what
ended up was three or four inches--
Glenda Durham:
Wow.
Charlotte:
--or more around, and that resulted in my having to wear a bra so tight,
with the strap cut and sewn together to bring the real breast high enough
to try and reach the height of my implant.
Glenda Durham:
Now, besides the Internet, where did you folks go to get information on
reconstructive surgery?"
Charlotte:
Most of what I got was given to me by the plastic surgeon.
Delores:
That's where I got most of my information from, because at the time I
didn't even have a computer. I just got my computer when I turned 50.
Glenda Durham:
[laughs]
Delores:
[laughing] So I got my information from my doctor. I didn't even know
anything about the Internet.
Glenda Durham:
Well now, was the information that you got helpful, or was it
confusing?
Delores:
It was very helpful, because from this--I had last year with the hematomas
on my liver?
Glenda Durham:
Mm-hmm.
Delores:
I went directly on the Internet. They showed you x-rays and what they
were, and they explained how they were there and everything, and the
reason that they were there. Going on the Internet is very helpful to me;
because some things doctors tell you and they really don't go into the
details of it.
Charlotte:
Well, maybe I trust doctors too much, but I just do what they say.
Delores:
May I say this to you?
Glenda Durham:
Please do.
Delores:
Trust in yourself! Because as Charlotte, I think that's her name, said,
doctors, they are human beings also. And lots of them, as I would say,
lots of them don't even have the bedside manner. They are there to do a
job and that's it, because I have, if you would say, I had some words with
some of them. Okay, because I even fired one [laughs]. But now we are
best of friends, because I let him know that you are not going to walk
over me, as we say.
Strange Gifts: Support Groups, Writing, Staying Positive and Keeping Busy
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Glenda Durham:
Well, let's talk about some of these other issues, too. How about support
groups for breast cancer and reconstructive surgery? What role did other
women in similar circumstances play in supporting you in your cancer
experiences?
Delores:
We have a support group in my home town, where I still attend that support
group thirteen years later. And the reason that I do, because if other
women come in I want them to know that you can be a cancer survivor and
live. When I started [going] to the group--I had a friend to come pick me
up and take me to the group--and being in the group you could share your
thoughts and learn from each other. And, like I say, thirteen years later
I'm still there, and when I go in they say, "Well, how many years has it
been for you?" When I say thirteen years, and they just might be coming
in, and to me, I have found this gives them encouragement.
Elaine:
I didn't go to any support groups. The old saying, "Misery loves
company," I find that not to be true. [laughs] I find it very depressing
to have so many people being affected by this. My support came from the
church and from my family and friends, but as far as actually going to a
support group, I just had no interest in that whatsoever for me. Like I
said, once again, misery, you know, the more people with it, I just find
that it would be more depressing, and I'm always an upbeat, positive
person, and I was afraid if I did go I'd be brought down. Instead of
helping to be able to turn everybody else being positive, I figured I'd be
the minority and I'd end up being pulled down, so for me, myself, I just
stayed away from it.
Glenda Durham:
You made your own support group.
Elaine:
Yes, I did.
Charlotte:
The others, that was true for me. I went to one support group, and after
being there for the whole meeting, I realized how blessed I was that I
didn't have problems that so many others had.
Delores:
There you go!
Charlotte:
I was going on to live life the best I could, and I didn't think that I
could help these other people, nor were they helping me except in a
positive way, so I did not go but once.
Delores:
Okay, for me.
Glenda Durham:
Delores, wait a minute now, Delores. You kept a diary that you turned
into a book. What's the name of the book?
Delores:
I did. At first I was keeping the diary because I could talk to my diary.
If I wanted to curse, cry, whatever I wanted to do, I could do that and no
one could go back and talk about what I had wrote in my diary. Once I
[found] the support group, I started going to the group and I also kept
busy. I had a float in the Road Show Parade. I like to do arts and
crafts. I sew. As a matter of fact, when I was going through my
chemotherapy, I did my friend's wedding. I made fifteen dresses.
Glenda Durham:
Oh, you are amazing!
Delores:
Her wedding was in July. I started on the dresses in April and I had
everything completed a whole week before her wedding.
Glenda Durham:
Oh! That is marvelous.
Charlotte:
And you have a lot of energy. [laughs]
Delores:
Well, it's not that I had the energy. I just refused to sit around and
feel sorry for myself. That done more harm to me than keeping busy.
Even right now, if I sit around I just start thinking or worrying or
whatever. I like to keep my mind at peace. I'm a very positive person.
I don't like being around negative people at all, and plus I have had two
book signings, and I have people that are giving me calls and want me to
come speak at their club, come speak at the church. This is the input
that I'm getting from getting out there and sharing my story.
Elaine:
Yeah, this is Elaine again. I agree. I mean, if you can stay positive.
You know, everything has ups and downs. Try not to focus on the downs and
the negatives. As small or whatever hope that you can have, hold on to
that and let that carry you through day to day because I've met people
that they stay in bed and they've let the cancer kill them, and yet they
have so much life still there. They just know that they have the cancer,
they've already, like, succumbed to it.
Delores:
Exactly!
Elaine:
You know, and I home-school my children. Last year when I had the chemo
and radiation I still home-schooled, and I home-school again this
year.
Delores:
Mm-hmm.
Elaine:
Life goes on. Like you said, you have to find whatever hope, no matter
how small it may be, and hang on to that to get you through the next
day.
Delores:
One day.
Elaine:
Because life is worth fighting for. We can't just give in to it. And I'm
not saying it's easy, I mean, yes, I went through my down times, too.
Delores:
So did I.
Elaine:
I just think you just got to--whatever can get you through to get you out
there and get out of the house, enjoy the fresh air, or the wind on your
face, the sun on your hair. Oh! All that stuff! It's so exciting now!
The world looks completely different than it did to me a year ago. So in
some ways I think of it as a blessing. I've been reborn again. You know,
I've lost my hair, it grew back. I actually--my husband got to highlight
it the other day. I'm so excited. I have blonde hair again. [laughs]
You know, just small things are just so exciting.
Delores:
Again, if you can show a person, because it has been said to me, "Oh, you
don't even look like you have had cancer." And I would respond to them,
"Well, what do people look like--
Delores:
--when you have cancer? I have had cancer."
Glenda Durham:
Well, I know in my case, having breast cancer was one of the most
important personal growth experiences of my life.
Delores:
Exactly.
Glenda Durham:
I look at it as a very strange gift.
Elaine:
Yup.
Early Detection and Breast Cancer Awareness
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Glenda Durham:
You've really been very strong about candor and reality in dealing with
mastectomies. Can you speak to that issue?
Elaine:
As far as?
Glenda Durham:
Well, the scars, the euphemisms?
Elaine:
Like I said, nothing--it doesn't bother--I remember so long ago I had seen
a movie with Ann Jillian, and she was a movie star that she played on a
show. I can't think of it now.
Other voices:
Mm-hmm.
Elaine:
And I remember, and I never forgot, I remember when she had her
mastectomy, she had a hard time. She didn't want her husband to see her.
She couldn't look in the mirror, and that's what I was afraid I was going
to feel, you know, because I'm thinking "Well, you know, maybe I should be
feeling this." And it's not nothing to me. And, like I said, my husband,
he took a week off. He changed my bandages and I wasn't afraid to have
him see me. I don't know, it just wasn't a problem for me. I figure as
long as I'm here and kicking, that's a good sign, right? [laughs] That's
the way I look at it. I mean, the breast defines me as a woman? It's
just fatty tissue. I just never, it was never a problem. It still isn't.
I have no interest in having anything. I'm comfortable being lopsided.
[laughs] It's just, I don't know. Like I said, your priorities get
switched around and you find out what's really important, and having one
breast isn't a big deal for me.
Glenda Durham:
Okay, Charlotte? You've had a lymphedema problem?
Charlotte:
Yeah.
Glenda Durham:
You have to wrap your arm in a sleeve and protect it?
Charlotte:
Yes, I only had one lymph node removed, and somehow I ended up with
lymphedema. I was surprised because more lymph nodes are removed. This
was supposedly the sentinel node, but I did have swelling in my arm and
went to the rehab, and she told me how to wrap my arm every night and wear
the sleeve every day, which I did. I followed the instructions real well
for a few years, but I've slacked up. Now when I know I'm going to be
using this right arm, like baking a cake or working in the garden, I will
put my sleeve back on, but it pinches and I don't wear it every day. But
I don't have much swelling.
Glenda Durham:
Let me ask all of you to give us a few words, if you will, on early
detection and awareness. Elaine, you can start. You've really looked
into this issue.
Elaine:
Well, yeah, and it would go back to what I was saying before. I just
think early detection is so important, and that's what you always hear
about. In my case, my doctor, even though I detected something, still
didn't find it to be an issue. So that right there is a problem, when you
do push early detection, but you also need to get the doctors to do their
part. [The doctors] need to see their patients, need to take it
seriously, look at every case individually and not just pass it off as
being something else, or if you don't have the risk factors, then it can't
be that. I think that's something that just kind of goes hand in hand.
We need to be in tune to our bodies, don't take no for an answer, and same
side. As far as doctors, I think some of them need to go back to school
and be re-educated on humanity and bedside manner goes a long ways. Not
everything is a technical case.
Glenda Durham:
Charlotte, do you have anything to add to that on early detection and
awareness?
Charlotte:
I think that's good to know that. A lot of people feel doomed when
they're diagnosed, but you know, there are a lot of ladies that you don't
even know that have had mastectomies around you. Like I emphasized to my
daughter, that mammogram is not going to detect all cancers but the
self-examination is very important, and I think we should get that
information out, not only to get a mammogram, but the
self-examination.
Glenda Durham:
Well, when it comes to reconstructive surgery, what I think I'm hearing
all of you say is that information is vital to a good decision.
Delores:
Yes, and please let me say this. In writing my book I did some research,
and I have a glossary in my book.
Glenda Durham:
And your book is called?
Delores:
"I Believe in Myself. I Don't Have to Cry Any More. Cancer Survival
Plus." The reason I brought that up, we as human beings have these cells
in our body, and in my research I found that lots of times we go through
lots of stress, [worrying], and things that we really don't understand
what we are doing. When they're saying there is no family history of
cancer in the family and people still have cancer, but it goes back again
to your own body. The cells that is within your body is from stress and
[worrying] and the other things that is going on in your life, and based
on research and everything. This can cause these cells to flare up within
your body, and really not even knowing that these things are there, and
sometimes you can't even detect it until it's too late. I have been
around some of my friends. They have been diagnosed since I have. They
are gone because they refused to go to the doctor. They don't want to
know that they have cancer. If they go they're afraid that they have
cancer and that they're going to die. And one of my main things is that
you're going to die anyway, so we can put this on the shelf and I look at
living.
Glenda Durham:
All right.
Elaine:
This is Elaine again; I just want to add a couple of things. I think
she's right. A lot of people go through denial, that they don't want
to--deep down they know, but they're afraid to actually hear the
words.
Delores:
Mm-hmm. Mm-hmm.
Elaine:
And I mean, everyone, like she was saying, everyone--we all live, we're
all going to die. No one is given a ticket saying, "You're going to live
to this age." It's a chance. You could be hit going to the mailbox or
getting in your car.
Delores:
Exactly.
Elaine:
I think that's another thing. People need to think of it, life isn't a
guarantee--
Delores:
Exactly.
Elaine:
--no matter what. And I think of cancer as a gift, because when my time
has come, at least I'm able to say goodbye to my loved ones and my
family.
Delores:
Exactly.
Elaine:
A lot of people get on a plane, or get in the car and they go through the
morning [saying], "Okay. Well, I'll see you at night." And they never
come home--
Delores:
True.
Elaine:
--so, it's all in the way you look at it. That's my whole thing.
Someone had sent me a card. I used to have a--I had over 200 cards that I
had received, and I had them all over my kitchen, in my doorways. It was
called my "wall of strength." We had strings from the ceiling with all
these cards on them. And one of the cards said, "It's all in the way you
look at it." And out of all the cards I received, that's the one that I
always think back to, because it's true. And I think that can carry over
in any part of your life. Not just the cancer, but any aspect--
Delores:
Exactly.
Elaine:
--so it can be positive. It doesn't have to be the death sentence. I
think we all need to start looking at it in a different light, because
we're so used to the old days, that it was a death sentence. But even
still I could die, like I said, going out to the car today or whatever.
So, I don't know. I just think of things differently. It just helps.
Charlotte:
Well your attitude might not physically have a lot to do with your
healing--
Delores:
Exactly.
Charlotte:
--but it sure makes you feel a lot better.
Elaine:
Yup.
Delores:
Mm-hmm. I agree.
Elaine:
Yeah. Definitely.
Delores:
A positive attitude, as long as you're thinking positive and your body is
going to heal better. If you're negative, always sitting around [saying],
"Oh, this hurts, that hurts." I mean, just about every day I get out of
my bed I hurt. But I'm glad to get out of my bed and be able to move.
Glenda Durham:
Well, on that note I think we'll wrap this discussion up. I hope our
discussion has helped you with some of the issues that may be part of your
life. I want to thank our guests, Elaine, Charlotte and Delores, for
their willingness to share their stories, thoughts, feelings, and a part
of their lives with us today. I hope that some of their experience 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
website and on the telephone by calling 1-877-333-HOPE. That's
1-877-333-H-O-P-E. For the American Cancer Society's Cancer Survivors
Network, I'm Glenda Durham, wishing each of you a great day, today and
every day.
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