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Choices
october 2013
bravamagazine.com

Breast cancer, BRCA testing and difficult decisions

 brava | october 2013

CONTENTS
58
photographed by Bobbi petersen (top left) and Todd Maughan (right)

66

52
52
Deciding
58
Mind Your
66
our library
Factors Business of the future
How testing for BRCA cancer Whats black, white and Step inside the
genes has changed the red all over? Your new Central Librarys
treatment game. fall work wear! innovative new space.
by Sandra Knisely Photographed by by Kelsey Bewick
Bobbi Petersen

october 2013 | bravamagazine.com 5

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Dawna McMillan, who is only 26, had a
feeling she would test positive for a BRCA
mutation. Her mother developed breast
cancer at age 32, while pregnant with
McMillan, and she recently lost a cousin
to the disease. When another cousin tested
positive for a BRCA mutation and strongly
urged McMillan to do the same, she de-
cided it was time to find out the truth.
In the back of my mind I knew it
would probably be positive, she says.
But seeing those test results, you still
cry, she says. Its not something you
want to see and know that youre going
to get cancer.
It was little consolation that a positive
test result doesnt always signal a dreaded
diagnosis for a patientmany go on to
never develop cancer. But usually the
best-case scenario involves years of
frequent monitoringincluding a con-
tinual whirlwind of breast exams. Even
more difficult to grapple with is the
restless paranoia of searching for a po-
tential health culprit you dont really
wish to find.
Shortly after receiving her results in
July, McMillan decided to schedule a pre-
ventive double mastectomy in November.
Using a diagnostic tool from Stanford
University, she and her doctors at UW
Health determined that the procedure
would reduce McMillans risk by almost
75 percenta comforting statistic, at a
not-so-comforting price. But in a world
where testing techniques have become
more sophisticated at hunting for the
genes that could seal the fate of our health,
more women are electing to say goodbye
to their breasts and hopefully, too, a battle
with cancer.

52 brava magazine | OCTOBER 2013

BRCA testing dominated news head-
lines last spring when actress Angelina
Jolie announced in The New York Times
that she had undergone a preventive (or
prophylactic) double mastectomy. Jolie
chose the procedure because she inherit-
ed a mutated form of BRCA1one of two
genes every woman has that, when mu-
tated, are linked to and can predict risk of
breast and ovarian cancer.
Jolie, whose mother died from breast
cancer at the age of 56, was hailed for
lending her well-known face to raise
awareness, and her bravery for publicly
detailing her deeply personal decision.
When unmutated, BRCA1 and BRCA2
genes are responsible for preventing
tumor growth, among other things.
Thankfully, today, a blood test can easily
detect the mutations which may in-
crease a womans cancer risk. But, only a
generation ago, women like McMillan,
with a family history of breast cancer,
were often at the mercy of their heredi-
tary fate. They simply had to wait and
see if they too would develop cancer like
their mother, aunt or sister did. These
days, women have the power to learn the
truth about their personal risk of devel-
oping breast cancer and the opportunity
to reduce that risk by preventively re-
moving their breasts.
Prophylactic mastectomies are on the
rise because there is more publicity about
breast disease [and BRCA] in general,
and plastic surgery has improved, says
Dr. Lee Wilke, a breast cancer surgeon
and associate professor at the Univer-
sity of Wisconsin School of Medicine and
Public Health. Wilke is also the director
of the UW Health Breast Center, which
provides screening, diagnoses and treat-
ments for breast disease, as well as pre-
vention services.
Her colleague, Dr. Ahmed Afifi, who
specializes in plastic surgery and recon-
struction, agrees, calling the increase in
preventive mastectomies a worldwide
trend.
Prophylactic mastectomies in patients
without cancer have been around a long
time, Afifi says. But yes, its becoming
more common, and were seeing younger
patients showing an interest in the pro-
cedure. We are seeing testing as making
a difference.
For McMillan, the decision to remove
her breasts wasnt an easy one. Shes
dreading the scarring and permanently
altered appearance of her breasts. She
also wont have the chance to breastfeed
in the future and will lose a great deal of
sensation in her breasts.
However, McMillan says, the peace of
mind she anticipates after the procedure
far outweighs the downsides of a preven-
tive mastectomy
I dont want to go through [cancer].
Im a nurse. Ive seen it firsthand, she
says. The earlier you do it, the higher
your chances of not developing cancer.
Other women like McMillan, who are
in their 20s and 30s, face especially tough
questions and concerns about fertility
and timelines for procedures like mas-
tectomies or oophorectomies (ovary re-
moval)often forcing them to struggle
with life questions they werent planning
to answer. Should a woman go ahead and
have a child now? Wait until theyre more
established financially or romantically?
Have eggs harvested for later?
The longest part of the conversation is
typically about children, says Dr. Lisa
Barroilhet, an assistant professor of on-
cology at the UW School of Medicine and
Public Health who works closely with
women considering genetic testing.
When women ask me what I would
do, I have no answer. It would take me a
long time to make a decision, she says.
Because of her family history, Mc-
Millan wanted a mastectomy as soon as
possible so that she could move on and
have children. Her mother dealt with the
emotional roller coaster of having cancer
while pregnant, and McMillan hopes to
avoid that experience by being proactive.
At first I was turned off to it, like,
whats going to happen if Im in posi-
tive? she says. But I feel like Im getting
out there, and others should too. Take
charge and figure this out while you can.
OCTOBER 2013 | bravamagazine.com 53

Who Should get a
BRCA Test?
Only five to 10 percent of all breast
cancers are linked to genetics, accord-
ing to the Susan G. Komen Foundation,
and not all forms of hereditary breast
cancer are related to BRCA gene
mutations. However, according to the
National Cancer Institute, women with
mutated forms of BRCA1 or BRCA2 are
five times more likely to develop breast
cancer than women with
nonmutated forms of the genes.
Besides the cost, the psychological
and medical consequences for a
woman who learns her genetic risk for
breast cancer can be very complex, so
genetic counselors at the UW Breast
Center are careful to refer only women
who truly should be tested, and they
then stay in close contact with women
who test positively for BRCA mutations.
We dont want them to get tested
inappropriately, says Wilke. We run
statistics and we have national guide-
lines to know if you meet the criteria.
Some of those criteria include a
pronounced family history of breast
cancer in first-degree relatives. These
include a womans mother, sisters and
daughter. A grandmothers breast
cancer is also considered, though its
not as strong of a risk factor.
The age of the relatives who
developed breast cancer is also
important. The average age for a
woman in the U.S. to enter menopause
is 51. Relatives diagnosed with breast
cancer before menopause, often in the
40s, indicate a higher chance that the
cancer is genetic.
Visit BRAVAmagazine.com to
learn more about your risk factors
for breast cancer.
54 brava magazine | OCTOBER 2013
Some women ultimately decide against
taking the BRCA test after talking with
genetic counselors. There are people
who dont want to change their natu-
ral life pathway, Barroilhet says. They
dont want to be guided by fear.
While she says she respects and under-
stands this perspective, Barroilhet ulti-
mately hopes patients will view the test as
valuable for making informed choices for
the future.
People are empowered by knowledge.
It can be traumatic but helpful for pa-
tients to make good decisions, Barroil-
het says. Its hard to encourage people
to not be defined by this. It shouldnt
change who you are.
BCRA and the bigger
picture
Mary Grundahls mother waged several
battles against cancer over many years,
first with breast cancer, then lung can-
cer and finally, brain cancer. So when
Grundahls first mammogram, at age 41,
turned up an irregularity, she understood
what she might be in for. When Grun-
dahl returned to the clinic for a follow-up
six months later, additional growths had
emerged and she was officially diagnosed
with breast cancer. Her treatment plan
was difficult, but clear.
In May, Grundahl had a single mastec-
tomy at UW Hospital. She subsequently
underwent reconstruction in the summer
2013, and her plastic surgeon anticipates
shell be looking good by New Years.
Grundahl is part of a growing number
of women who receive a breast cancer
diagnosis to also receive a BRCA test. Yet
for those with nongenetic breast cancer
or with genetic breast cancer unrelated
to BRCA mutations, a negative BRCA test
result isnt always a complete relief.
Before taking the BRCA test, Grundahl
was hoping to have a contralateral mas-
tectomy, meaning she would have her
healthy breast removed preventively
along with the diseased one. However,
Grundahl tested negative for a BRCA
mutation, and the result meant her in-
surance wouldnt cover the additional
procedure.
If insurance would have covered this, I
would have had both removed, she says.
Im not a control freak, but it would
have been nice to have the option.
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Reconstruction now,
later or never?
McMillan and Grundahl decided they
wanted to pursue breast reconstruction
shortly after their mastectomies. But for
some women, the next step isnt always
so clear.
However, Grundahl says she was ulti- Wilke stresses that reconstruction is
mately comfortable with her treatment never a required part of the process, and na
aw nd
plan because of her firm trust in the doc- she sees several patients, especially those f t : D ah l a
le d
tors and counselors at UW Health. They based in Madison, who elect to remove m run
e fro ry G
is a .
know what theyre doing. If it had been their breasts and stop there. kw , M Ward .co
m
o c an in e t e n t
that important, they certainly would How important are her breasts to her Cl Mill Lee z
Mc risty ga o n
have told me to take both, she says. identity as a woman? As a sexual part- ma b c
Ch A VA e we the
R iv f d
Based on the way it was positioned to ner? says Wilke about what a woman it B lus e o an
Vis exc mor hese
me, this was my best course of action. should consider before reconstruction. r g
fo rin om ors t .
a
Though taking the genetic test altered Christy Lee Ward decided against re- sh ry fr urviv
sto er s
the future for Grundahl, she doesnt re- construction after her lumpectomy oth
gret taking it. Grundahl says now her five to remove cancerous tissue from one
sisters have more knowledge about their breast. She opted for lumpectomy rather
own odds of developing breast cancer in than full breast mastectomy because she
the future. wanted to preserve as much of her own
I did it for my family. For my daugh- tissue as possible; after that surgery, she
ter, she says. felt no need to go under anesthesia again.

OCTOBER 2013 | bravamagazine.com 55


Cost of Testing
The cost of the blood test to determine
BRCA1 and BRCA2 mutations can range
from a few hundred dollars to upward-
sof $4,000, depending on the specific
type of BRCA test a woman needs,
which varies by ethnicity, family history
and other factors. Insurance often pays
for the test when genetic counselors
recommend it.
In June, the U.S. Supreme Court handed
down an important decision to limit
gene patentability that could eventually
lead to significant cost reductions for
genetic tests like those used for
BRCA1 and BRCA2. In turn, lower
prices will likely make the tests
increasingly accessible to a much
wider range of women.
56 brava magazine | OCTOBER 2013
It just didnt feel like something I
wanted to undergo, she says. I dont
really identify closely with my physical
body. I identify more with my spiritual
self. I dont even have a prosthetic.
Though Ward is far from alone in decid-
ing to forgo reconstruction after breast
cancer-related surgeries, experts agree
women at least need to be aware that its
a viable option. The Womens Health
and Cancer Rights Act, passed in 1999,
requires insurance companies to pay for
breast reconstruction if a mastectomy
patient wants it.
A lot of women werent referred [to a
plastic surgeon] before this law because
it was an extra financial burden. Now
its not really a reason, says Dr. Samuel
Poore, a plastic surgeon at UW Hospital
who specializes in breast reconstruction.
Its a huge wave of relief for women.
This law was set up to protect them.
Unfortunately many Wisconsin wom-
en, especially those living in smaller or
more rural communities, dont know the
law exists. Poore and Afifi are among the
health care providers at the UW Breast
Center who participate in outreach ef-
forts to help spread the word.
Multiple studies show women from
smaller communities across the coun-
try are never even referred to a plastic
surgeon, Poore says. Were at a point
now where, through the Breast Center,
were getting the message out around the
state that reconstruction is available and
should be offered to every woman under-
going mastectomy.
Its also very common for women to
wait awhile before going through recon-
struction surgeries.
Women can have reconstruction any
time along the way, Poore says. Just
because you havent had it in the past
doesnt mean you cant in the future.
Navigating the
unexpected
One day during her recovery, Wards
tongue turned bright, Smurf-colored
blue. I wasnt having a reaction, she
says. I felt fine. It was just blue.
Its the little things like this about
breast cancer that women often dont
know to expect, and theres only so much
about the experience that will fit into a
brochure or pamphlet from the doctor.
Instead, UW Health doctors and breast
cancer survivors themselves strongly en-
courage women undergoing any breast-
related procedures to seek out others who
have been there.
Barroilhet says finding additional
sources for support is crucial for women
who undergo genetic testing and any
subsequent procedures. They should be
asking who can I talk to? Who has walked
this road before me? she says.
Sometimes access to support groups
can be an issue. McMillan, who lives and
works in Beloit, currently has no plans
to seek out a support group, but she ac-
knowledges this may change after her
surgery. Though she was referred to a
group called Facing Our Risk of Cancer,
or FORCE, the meetings are only held in
Milwaukee and Chicago. For now, she
relies on her husband and her family.
Grundahl also thought she wouldnt
need a support network outside of her
immediate family. I dont like woe-is-
me type stuff, she says.

The turning point came after Grun-
dahl continued to feel unwell after her
mastectomy. Though she had anticipated
returning to work quickly at JG Develop-
ment, which she and her husband own,
she realized the healing process was going
to take time.
At the urging of a friend, she set up a
profile on Caring Bridge, a website de-
signed to connect patients with their
support network during medical crises.
Grundahl says she was amazed at the
number of family and friends who then
offered support.
Dont deny them the chance to help
you through this. They say it takes a vil-
clinicians at Mercy Hospital in Janesville
recommended Ward connect with Af-
ter Breast Cancer Diagnosis (ABCD), a
national program that carefully matches
similar women together in pairs to share
their experiences.
Ward, who currently works for the
UW-Madison political science depart-
ment, also decided to pursue a patient
advocacy certificate at the UW-Madison
Center for Patient Partnerships.
I dont know what tomorrow holds
for that, she says, but I feel spiritually
drawn into this avenue, to reach out to
other women, other families who have
been touched by this experience.
In her role as a mentor with ABCD,
which has a branch in Milwaukee that
helps women across the state, Ward is
already helping others grapple with the

ple
lage to raise a child. It also takes your uncertainty and unexpected aspects of
network to get through this, she says. their breast cancer. I think its valuable o
Take a helping hand when its offered. [to talk with other survivors], she says, t pe
Ward decided to seek out that helping because even though no ones journey is
m os
,
hand after she realized the pamphlets exactly like anothers, most people dont
e r s sis.
th o
no iagn
from her doctor didnt seem to accurately have any experience with cancer until
describe her thoughts and feelings. their diagnosis. a d
I wasnt fearful, I wasnt hopeless,
y like heir
she says. But I was sitting on the couch ct l il t
one day, reading the information, and I e xa r unt
just started bawling.
e y i s an c e
Fortunately Ward was able to talk to r n c
her grandmother about her own experi-
s jou with
ences with breast cancer, which she says
o ne nce
helped. About a year later, one of her
h no perie
ug ex
t h o an y However, body tissue reconstruction is

e n ve
still a relatively new technique, and its not

Ev t h a for everyone. Women who are fairly thin

n wont have enough tissue available to form
do new breasts, and most patients will still
In addition to legislation to improve access
to breast reconstruction, the surgical
techniques and materials used for breast
New Advances in reconstruction have come a long way in
the past decade. Some women now have
Breast Reconstruction the option of using their own body tissue,
usually taken from the abdomen, to build
new breasts.
This approach, which Drs. Afifi, Poore and
Wilke have been performing on patients at
UW Hospital, has its benefits. A woman can
wake up after surgery with breasts, rather
than finding them totally gone. Using the
patients own body tissue also means the
breasts will age more naturally. The pro-
cedure also reduces the risk of infections
from plastic and eliminates the need to
periodically replace implants, which should
be done, on average, every 10 years.
need to undergo additional procedures to
refine the breasts, Wilke says.
The vast majority of women undergoing
breast reconstruction today still receive
implants. They are still the simplest, fastest
and least invasive, says Afifi.
And plenty of innovation is happening
in the realm of implants, too. For example,
doctors are beginning to use implants
made of materials derived from human
skin. Implants also are available now in a
teardrop shape, which can provide a more
natural result.
Overall, Afifi hopes the new advances in
reconstruction techniques bring a measure
of comfort to women as they go through a
mastectomy.
Were making the decision to go ahead
with a mastectomy easier, he says. I hope
knowing we have good options for recon-
struction would encourage more patients
to get mammograms and the [BRCA] test..

OCTOBER 2013 | bravamagazine.com 57