DETROIT — Nancy
Hearshen worries much more about her daughter's future than
her own chances of getting breast or ovarian cancer.
Hearshen, 67, and her
daughter, Rachel, 35, who live in Farmington Hills, Mich.,
carry a genetic mutation that significantly raises their risk
of getting either type of cancer.
Nancy Hearshen chose
to have her ovaries removed to cut the odds she'd ever develop
ovarian cancer. She's weighing a double mastectomy as another
safeguard.
Her daughter, a 1996
University of Michigan English literature graduate who has
returned to school at Wayne State University to become a
teacher, has chosen a different path. Rachel Hearshen is
single and wants to have a family someday.
She undergoes tests
every six months and exams several times a year to look for
any early signs of cancer. She also takes the drug Tamoxifen,
which has side effects including hot flashes, to discourage
cells in her breasts from becoming cancerous.
"It's like
everything changed from that day forward," she said of
her Feb. 17, 2009, diagnosis of the gene mutation known as
BRCA2. Her maternal grandmother and aunt died of cancer and
most likely had the trait without knowing it; testing was
largely unheard of 10 to 20 years ago.
Families like the
Hearshens have new resources as they weigh difficult choices
about preventive care. More hospitals are developing cancer
genetics programs that offer the latest in mammography and
magnetic resonance imaging (MRI) tests to find cancer early,
as well as teams of surgeons, genetic counselors and doctors
who help patients and their personal support teams make major
decisions about the issues they face.
Some hospital
systems, such as the University of Michigan, began their
high-risk breast cancer programs as far back as 1994. Since
then, the Breast and Ovarian Risk Evaluation Program has seen
about 1,800 patients and expects more than 200 patients this
year. Other programs, including the High Risk Breast Program
at Beaumont Hospital in Royal Oak, Mich., opened this year.
More centers are expected in the years ahead.
"In 2010,
genetics is not research," said Whitney Ducaine, a
certified genetic counselor at Beaumont. She's trying to
spread the word about facilities that have comprehensive
cancer genetics programs and their importance.
The clinics cater to
a growing population — often families with cancer clusters
among relatives before age 50 — who want to learn whether
they have gene mutations with a very high chance of causing
cancer, sometimes as much as 90 percent. Though women
typically outnumber men as much as 5 to 1, the clinics report
they are beginning to see more male patients.
"A lot of men
are motivated because of their children" to find out if
they have a mutation they may pass along, said Kara Milliron,
a certified genetic counselor for the University of Michigan
program.
Counselors at high
risk breast and ovarian cancer clinics credit the public's
increased willingness to find out if they carry cancer
mutations with passage of the federal Genetic Information
Nondiscrimination Act of 2008, which bans discrimination in
health insurance against people who test positive for cancer
mutations.
The same year,
actress Christina Applegate went public with her story that
she underwent a double mastectomy after finding a small, early
tumor in one of her breasts. She carries a genetic mutation
known as BRCA1. That, too, triggered an outpouring of calls,
said Dr. Ruth Lerman, director of the Beaumont clinic, which
opened in January, consolidating genetic services at the
hospital.
Lerman brings much to
the job, including three separate diagnoses of breast cancer.
She's also an Ashkenazi Jew, a group that carries a higher
incidence of cancer, but she has tested negative for gene
mutations.
Beyond her
contributions to the clinic as a doctor, Lerman started
wellness, yoga and meditation groups called Silver Linings at
Beaumont to teach nutrition, exercise and healthy mental
habits, or mindfulness, to previvors — the term that was
coined for people who carry the mutated genes but have yet to
develop cancer — and survivors, who meet separately. She
believes the alternative approaches make a difference, saying
women who exercise vigorously for 45 minutes a day lower their
breast cancer risk by 40 percent.
Ellyn Davidson, 39,
of Huntington Woods, Mich., started the Detroit-area chapter
of Facing Our Risk of Cancer Empowered, or FORCE, a national
nonprofit organization designed for people at risk of
hereditary breast and ovarian cancer. Her involvement was a
way to show her gratitude for the care she found at Beaumont
following her own breast cancer diagnosis in August 2007.
Davidson, the mother
of three children ages 4 to 10, is a managing partner at
Brogan & Partners, a marketing firm in Birmingham. After
she discovered that she carried the BRCA2 gene mutation, she
had her ovaries removed.
"I always tell
the story about how I had to get an injection the day before
my mastectomy surgery and I went in alone," Davidson
recalled. She said she went to lots of doctor appointments and
tests by herself, including one to inject a dye to find out
whether cancer had spread to her lymph nodes. "I saw it
as a no big deal," she said.
Still, she
appreciated how a staffer held her hand throughout the
injection and "that kind of set the stage. I saw that at
every level at Beaumont."
Christina Edwards,
29, of Windsor, Ontario, and her sister, Sarah Peterson, 25,
of Roseville, Mich., learned recently that each of them
carries the BRCA1 gene mutation. They plan to wait it out for
now with tests, doctor visits and breast self-exams. Their
mother, Regina Peterson, 51, and oldest sister, Rachel
Peterson, 31, both of Eastpointe, Mich., were diagnosed with
breast cancer in the past year and later learned that they,
too, carry the gene.
Before Sarah Peterson
was given her test results, Beaumont counselors asked, in so
many words, 'Can you take it?,' she said. They went over her
options, discussed statistics and helped her make appointments
for tests and doctor visits. The center also is helping Rachel
and Sarah Peterson and Rachel Hearshen, all of whom are
uninsured, find ways to pay for their care. Still, the
Petersons need to find financial help for their tests and
surgeries one treatment at a time.
Hearshen gets extra
help from Project Chessed, a program with Jewish Family
Services of Metropolitan Detroit for uninsured Jewish adults.
Sarah Peterson
expects to eventually have a double mastectomy, if she can
find a way to pay for it.
"I have come to
terms with it," she said of her choices. Her mother's
family has nearly a dozen people who have had cancer, some
dying from it, and another half dozen who have tested positive
for the cancer gene mutations in the past few years.
Edwards saw a genetic
counselor in Canada in a 15-minute session. "All they
told me was to get an MRI" along with referring her to a
gynecologist and to a breast program for a mammogram. The next
available mammogram appointment is in February, months longer
than a typical wait of about a week at most clinics in the
U.S.
"It's great to
have all the free stuff (in Canada), but the major downside is
you have to wait," she said. Edwards wants a baby, so she
hopes to get counseling soon about fertility choices. Her
husband, Ken, has told her, "We'll get through it
together," and that he's OK with adoption, if that is the
choice they make to avoid passing along the cancer mutation.
Edwards, the
self-described crybaby of the family, has shed lots of tears
since she learned she was a cancer gene carrier. Getting more
than strict medical advice would have helped, she said.
Those feelings can be
addressed in counseling, Ducaine said. Family members
"come to me saying, 'I know I'm going to get this cancer.
It's not if, it's when.'
"Genetic testing
can be very empowering because it can help women and men know
they don't have to wait around for cancer to happen. They can
feel in charge."
———
IF YOU'RE AT HIGH
RISK
Some 5 percent to 10
percent of all breast cancer cases — about 16,000 new cases
a year — are likely due to an inherited mutation of two
breast cancer genes known as BRCA1 and BRCA2. Everyone has
these two genes. When they mutate, they greatly increase the
chance of several types of cancer developing in men and women.
Some, however, never develop cancer.
Studies are under way
to determine what causes some people with the mutations to
develop cancer when others do not.
Men and women with a
BRCA mutation have a 1 in 2 chance of passing the chromosomal
abnormality to their children, whereas people without it
cannot.
A positive test means
a person has the mutation. A negative test result shows they
do not. Tests often are covered by insurance, including those
with Medicaid coverage who meet the plan's criteria.
Testing may cost as
much as $4,000 — unless a mutation already has been
discovered in a family. Then, costs drop to about $400 because
it's easier to find a mutation once a precise chromosome has
been identified.
Families with these
gene mutations often have:
Many cancer cases in
a family, especially breast or ovarian cancer.
One or more family
members diagnosed with cancer before age 50 or relatives with
several different types of cancer.
Male breast cancer or
clusterings of colon, prostate, stomach or pancreatic tumors.
Any family relative
who is of Ashkenazi Jewish descent and who has relatives who
have had breast or ovarian cancer.
If you have those
problems in your family, ask your physician about being tested
for the gene and find out if the hospital he or she is
affiliated with has a high-risk clinic or certified genetic
counselors.
———
IF YOU HAVE THE
GENETIC MUTATION
Carriers have the
option of watchful waiting and tests; preventive strategies,
also known as prophylactic surgery and chemotherapy; and what
are called chemoprevention drugs, such as Tamoxifen, to lower
the risk of cancer. Preventive surgery includes removal of the
breasts or possibly of the ovaries and fallopian tubes.
Removal of both
breasts lowers a woman's risk of developing breast cancer by
as much as 90 percent, and removal of ovaries and fallopian
tubes reduces the risk of ovarian cancer by 54 percent.
Tamoxifen lowers a woman's breast cancer risk by 50 percent.
Carriers all are
encouraged to:
Do breast self-exams
beginning at age 18 and have exams performed by doctors
starting at age 25, or 10 years before the youngest person in
a family was diagnosed with cancer.
Have mammograms and
breast magnetic imaging resonance (MRI) tests alternating
every six months. Women who aren't finished with child-bearing
should undergo semi-annual ultrasound tests and an ovarian
cancer blood test, called CA125, beginning at ages 25-30.
———
WHERE TO GO FOR HELP
Many large hospital
systems have counselors specializing in cancer genetics, and
several have clinics for people at high risk of developing
breast or ovarian cancer because they carry a genetic
mutation.
SUPPORT GROUP
