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october 2013

Breast cancer, BRCA testing and difficult decisions
brava | october 2013

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


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

october 2013 | 5
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frequent monitoring—including a con-
tinual whirlwind of breast exams. Even
more difficult to grapple with is the
Dawna McMillan, who is only 26, had a restless paranoia of searching for a po-
feeling she would test positive for a BRCA tential health culprit you don’t really
mutation. Her mother developed breast wish to find.
cancer at age 32, while pregnant with Shortly after receiving her results in
McMillan, and she recently lost a cousin July, McMillan decided to schedule a pre-
to the disease. When another cousin tested ventive double mastectomy in November.
positive for a BRCA mutation and strongly Using a diagnostic tool from Stanford
urged McMillan to do the same, she de- University, she and her doctors at UW
cided it was time to find out the truth. Health determined that the procedure
“In the back of my mind I knew it would reduce McMillan’s risk by almost
would probably be positive,” she says. 75 percent—a comforting statistic, at a
“But seeing those test results, you still not-so-comforting price. But in a world
cry,” she says. “It’s not something you where testing techniques have become
want to see and know that you’re going more sophisticated at hunting for the
to get cancer.” genes that could seal the fate of our health,
It was little consolation that a positive more women are electing to say goodbye
test result doesn’t always signal a dreaded to their breasts and hopefully, too, a battle
diagnosis for a patient—many go on to with cancer.
never develop cancer. But usually the
best-case scenario involves years of

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- more common, and we’re seeing younger
ed a mutated form of BRCA1—one of two patients showing an interest in the pro-
genes every woman has that, when mu- cedure. We are seeing testing as making
tated, are linked to and can predict risk of a difference.”
breast and ovarian cancer. For McMillan, the decision to remove
Jolie, whose mother died from breast her breasts wasn’t an easy one. She’s
cancer at the age of 56, was hailed for dreading the scarring and permanently
lending her well-known face to raise altered appearance of her breasts. She
awareness, and her bravery for publicly also won’t have the chance to breastfeed
detailing her deeply personal decision. in the future and will lose a great deal of
When unmutated, BRCA1 and BRCA2 sensation in her breasts.
genes are responsible for preventing However, McMillan says, the peace of
tumor growth, among other things. mind she anticipates after the procedure
Thankfully, today, a blood test can easily far outweighs the downsides of a preven-
detect the mutations which may in- tive mastectomy
crease a woman’s cancer risk. But, only a “I don’t want to go through [cancer].
generation ago, women like McMillan, I’m a nurse. I’ve seen it firsthand,” she
with a family history of breast cancer, says. “The earlier you do it, the higher
were often at the mercy of their heredi- your chances of not developing cancer.”
tary fate. They simply had to wait and Other women like McMillan, who are
see if they too would develop cancer like in their 20s and 30s, face especially tough
their mother, aunt or sister did. These questions and concerns about fertility
days, women have the power to learn the and timelines for procedures like mas-
truth about their personal risk of devel- tectomies or oophorectomies (ovary re-
oping breast cancer and the opportunity moval)—often forcing them to struggle
to reduce that risk by preventively re- with life questions they weren’t planning
moving their breasts. to answer. Should a woman go ahead and
“Prophylactic mastectomies are on the have a child now? Wait until they’re more
rise because there is more publicity about established financially or romantically?
breast disease [and BRCA] in general, Have eggs harvested for later?
and plastic surgery has improved,” says “The longest part of the conversation is
Dr. Lee Wilke, a breast cancer surgeon typically about children,” says Dr. Lisa
and associate professor at the Univer- Barroilhet, an assistant professor of on-
sity of Wisconsin School of Medicine and cology at the UW School of Medicine and
Public Health. Wilke is also the director Public Health who works closely with
of the UW Health Breast Center, which women considering genetic testing.
provides screening, diagnoses and treat- “When women ask me what I would
ments for breast disease, as well as pre- do, I have no answer. It would take me a
vention services. long time to make a decision,” she says.
Her colleague, Dr. Ahmed Afifi, who Because of her family history, Mc-
specializes in plastic surgery and recon- Millan wanted a mastectomy as soon as
struction, agrees, calling the increase in possible so that she could move on and
preventive mastectomies a “worldwide have children. Her mother dealt with the
trend.” emotional roller coaster of having cancer
“Prophylactic mastectomies in patients while pregnant, and McMillan hopes to
without cancer have been around a long avoid that experience by being proactive.
time,” Afifi says. “But yes, it’s becoming “At first I was turned off to it, like,
what’s going to happen if I’m in posi-
tive?” she says. “But I feel like I’m getting
out there, and others should too. Take
charge and figure this out while you can.”

OCTOBER 2013 | 53
Some women ultimately decide against
taking the BRCA test after talking with
genetic counselors. “There are people
who don’t want to change their natu-
ral life pathway,” Barroilhet says. “They
don’t 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-
Who Should get a tients to make good decisions,” Barroil-
BRCA Test? het says. “It’s hard to encourage people
to not be defined by this. It shouldn’t
Only five to 10 percent of all breast change who you are.”
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 BCRA and the bigger
mutations. However, according to the picture
National Cancer Institute, women with Mary Grundahl’s mother waged several
mutated forms of BRCA1 or BRCA2 are
battles against cancer over many years,
five times more likely to develop breast
cancer than women with
first with breast cancer, then lung can-
nonmutated forms of the genes. cer and finally, brain cancer. So when
Grundahl’s first mammogram, at age 41,
Besides the cost, the psychological turned up an irregularity, she understood
and medical consequences for a what she might be in for. When Grun-
woman who learns her genetic risk for dahl returned to the clinic for a follow-up
breast cancer can be very complex, so six months later, additional growths had
genetic counselors at the UW Breast emerged and she was officially diagnosed
Center are careful to refer only women with breast cancer. Her treatment plan
who truly should be tested, and they
was difficult, but clear.
then stay in close contact with women
who test positively for BRCA mutations.
In May, Grundahl had a single mastec-
tomy at UW Hospital. She subsequently
“We don’t want them to get tested underwent reconstruction in the summer
inappropriately,” says Wilke. “We run 2013, and her plastic surgeon anticipates
statistics and we have national guide- she’ll “be looking good by New Year’s.”
lines to know if you meet the criteria.” Grundahl is part of a growing number
of women who receive a breast cancer
Some of those criteria include a diagnosis to also receive a BRCA test. Yet
pronounced family history of breast for those with nongenetic breast cancer
cancer in first-degree relatives. These
or with genetic breast cancer unrelated
include a woman’s mother, sisters and
daughter. A grandmother’s breast
to BRCA mutations, a negative BRCA test
cancer is also considered, though it’s result isn’t always a complete relief.
not as strong of a risk factor. Before taking the BRCA test, Grundahl
was hoping to have a contralateral mas-
The age of the relatives who tectomy, meaning she would have her
developed breast cancer is also healthy breast removed preventively
important. The average age for a along with the diseased one. However,
woman in the U.S. to enter menopause Grundahl tested negative for a BRCA
is 51. Relatives diagnosed with breast mutation, and the result meant her in-
cancer before menopause, often in the
surance wouldn’t cover the additional
40s, indicate a higher chance that the
cancer is genetic.
“If insurance would have covered this, I
Visit to would have had both removed,” she says.
learn more about your risk factors “I’m not a control freak, but it would
for breast cancer. have been nice to have the option.”

54 brava magazine | OCTOBER 2013
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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 isn’t 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 they’re doing. If it had been their breasts and stop there. kw , M Ward .co
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 .
Though taking the genetic test altered Christy Lee Ward decided against re- sh ry fr urviv
sto er s
the future for Grundahl, she doesn’t 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 | 55
“It just didn’t feel like something I
wanted to undergo,” she says. “I don’t
really identify closely with my physical
body. I identify more with my spiritual
self. I don’t even have a prosthetic.”
Though Ward is far from alone in decid- “Women can have reconstruction any
ing to forgo reconstruction after breast time along the way,” Poore says. “Just
cancer-related surgeries, experts agree because you haven’t had it in the past
women at least need to be aware that it’s doesn’t mean you can’t in the future.”
a viable option. The Women’s Health
and Cancer Rights Act, passed in 1999,
requires insurance companies to pay for Navigating the
Cost of Testing breast reconstruction if a mastectomy unexpected
The cost of the blood test to determine patient wants it. One day during her recovery, Ward’s
BRCA1 and BRCA2 mutations can range “A lot of women weren’t referred [to a tongue turned bright, “Smurf-colored”
from a few hundred dollars to upward- plastic surgeon] before this law because blue. “I wasn’t having a reaction,” she
sof $4,000, depending on the specific it was an extra financial burden. Now says. “I felt fine. It was just blue.”
type of BRCA test a woman needs, it’s not really a reason,” says Dr. Samuel It’s the little things like this about
which varies by ethnicity, family history Poore, a plastic surgeon at UW Hospital breast cancer that women often don’t
and other factors. Insurance often pays know to expect, and there’s only so much
who specializes in breast reconstruction.
for the test when genetic counselors about the experience that will fit into a
“It’s a huge wave of relief for women.
recommend it.
This law was set up to protect them.” brochure or pamphlet from the doctor.
In June, the U.S. Supreme Court handed Unfortunately many Wisconsin wom- Instead, UW Health doctors and breast
down an important decision to limit en, especially those living in smaller or cancer survivors themselves strongly en-
gene patentability that could eventually more rural communities, don’t know the courage women undergoing any breast-
lead to significant cost reductions for law exists. Poore and Afifi are among the related procedures to seek out others who
genetic tests like those used for health care providers at the UW Breast have been there.
BRCA1 and BRCA2. In turn, lower Center who participate in outreach ef- Barroilhet says finding additional
prices will likely make the tests forts to help spread the word. sources for support is crucial for women
increasingly accessible to a much who undergo genetic testing and any
“Multiple studies show women from
wider range of women. subsequent procedures. “They should be
smaller communities across the coun-
try are never even referred to a plastic asking who can I talk to? Who has walked
surgeon,” Poore says. “We’re at a point this road before me?” she says.
now where, through the Breast Center, Sometimes access to support groups
we’re getting the message out around the can be an issue. McMillan, who lives and
state that reconstruction is available and works in Beloit, currently has no plans
should be offered to every woman under- to seek out a support group, but she ac-
going mastectomy.” knowledges this may change after her
It’s also very common for women to surgery. Though she was referred to a
wait awhile before going through recon- group called Facing Our Risk of Cancer,
struction surgeries. 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 wouldn’t
need a support network outside of her
immediate family. “I don’t like woe-is-
me type stuff,” she says.

56 brava magazine | OCTOBER 2013
clinicians at Mercy Hospital in Janesville
recommended Ward connect with Af-
ter Breast Cancer Diagnosis (ABCD), a
national program that carefully matches
The turning point came after Grun- similar women together in pairs to share
dahl continued to feel unwell after her their experiences.
mastectomy. Though she had anticipated Ward, who currently works for the
returning to work quickly at JG Develop- UW-Madison political science depart-
ment, which she and her husband own, ment, also decided to pursue a patient
she realized the healing process was going advocacy certificate at the UW-Madison
to take time. Center for Patient Partnerships.
At the urging of a friend, she set up a “I don’t know what tomorrow holds
profile on Caring Bridge, a website de- for that,” she says, “but I feel spiritually
signed to connect patients with their drawn into this avenue, to reach out to
support network during medical crises. other women, other families who have
Grundahl says she was amazed at the been touched by this experience.”
number of family and friends who then In her role as a mentor with ABCD,
offered support. which has a branch in Milwaukee that
“Don’t deny them the chance to help helps women across the state, Ward is
you through this. They say it takes a vil- already helping others grapple with the

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 it’s valuable o
“Take a helping hand when it’s offered.” [to talk with other survivors],” she says, t pe
Ward decided to seek out that helping “because even though no one’s journey is
m os
hand after she realized the pamphlets exactly like another’s, most people don’t
e r ’s sis.”
th o
no iagn
from her doctor didn’t seem to accurately have any experience with cancer until
describe her thoughts and feelings. their diagnosis.” a d
“I wasn’t fearful, I wasn’t 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 it’s not

“ Ev ’ t h a for everyone. Women who are fairly thin
n won’t have enough tissue available to form
do new breasts, and most patients will still
need to undergo additional procedures to
refine the breasts, Wilke says.
The vast majority of women undergoing
In addition to legislation to improve access breast reconstruction today still receive
to breast reconstruction, the surgical implants. “They are still the simplest, fastest
techniques and materials used for breast and least invasive,” says Afifi.
New Advances in reconstruction have come a long way in And plenty of innovation is happening
the past decade. Some women now have in the realm of implants, too. For example,
Breast Reconstruction the option of using their own body tissue, doctors are beginning to use implants
usually taken from the abdomen, to build made of materials derived from human
new breasts. skin. Implants also are available now in a
This approach, which Drs. Afifi, Poore and teardrop shape, which can provide a more
Wilke have been performing on patients at natural result.
UW Hospital, has its benefits. A woman can Overall, Afifi hopes the new advances in
wake up after surgery with breasts, rather reconstruction techniques bring a measure
than finding them totally gone. Using the of comfort to women as they go through a
patient’s own body tissue also means the mastectomy.
breasts will age more naturally. The pro- “We’re making the decision to go ahead
cedure also reduces the risk of infections with a mastectomy easier,” he says. “I hope
from plastic and eliminates the need to knowing we have good options for recon-
periodically replace implants, which should struction would encourage more patients
be done, on average, every 10 years. to get mammograms and the [BRCA] test..”

OCTOBER 2013 | 57