Family Cancer Registry
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Photo by Anne Burke
UCLA Photographic Services
Tatiana Day, left, with Julianne Wojciak, a genetic counselor
at UCLA's Family Cancer Registry. |
UCLA helps families cope with genetic cancers
by Anne burke
ucla today Staff
Tatiana Day grew up knowing that early-onset breast cancer ran
in her family. But last year, when her father, a physician in Indiana,
tested positive for a cancer-susceptibility gene called BRCA2, a
vague threat turned into a real danger.
Day’s paternal grandmother died of breast cancer at age 33;
her paternal great grandmother was in her early 40s when she succumbed
to the disease.
If Day, then age 25, also carried the BRCA2 gene — and the
odds were even that she did — it would mean her own lifetime
risk of breast cancer was as high as 80%.
Day had to find out for sure. Having no idea where to find genetic
testing in the Los Angeles area, she jumped online. One of the first
results that popped up in a Google search was the UCLA Family Cancer
Registry.
Part of the Jonsson Cancer Center, the registry offers confidential
genetic counseling and testing, as well as the latest information
on cancer and heredity for people with a strong family history of
the disease, meaning two or more blood relatives who have had the
same type of cancer. Since opening in 1997, shortly after the advent
of genetic testing for hereditary breast cancer susceptibility,
about 500 people have used the registry’s services.
The registry’s primary function, however, is as a repository
for information useful to researchers studying how cancers develop
and how they can be prevented, treated and cured. Without this easy
access to family histories and lifestyle data, it might take a researcher
years to identify enough people and collect the information needed
to conduct a study.
Day, then a graduate student in social work and public administration
at USC, was impressed with the registry from the outset. Joyce Seldon,
a genetic counselor and deputy director of the registry, spent an
hour with her on the phone explaining more about the BRCA gene and
genetic testing. A few weeks later, Day came to the Center for the
Health Sciences at UCLA for a sit-down with the genetic counselor
assigned to her case, Julianne Wojciak.
Wojciak has a master’s degree in genetic counseling and a
gentle manner that Day would appreciate when she returned to the
registry a few weeks later to learn the results of her genetic testing.
The news was not good, but Wojciak seemed to know the right thing
to say and do. She explained the difference between a cancer diagnosis
— which the BRCA gene was not — and a predisposition
to cancer. She urged Day to take as much time as she wanted to weigh
her options, which ranged from close monitoring to prophylactic
surgery.
Just as important, Day recalled, Wojciak “let me, kind of,
pause and cry when I needed to.”
In the end, Day opted for preventative surgery. With a bright future
ahead of her — an upcoming wedding and a planned-for career
in health-care policy — Day wanted to take charge of her health,
rather than leave it in the hands of a disease that has already
claimed the lives of too many women in her family.
Her surgery now behind her, Day is eager to get on with her life,
mostly free of the debilitating fear of breast cancer.
For her part, Wojciak is glad she was able to help Day make an
informed choice.
“Patients who take time to consider all of their options
will ultimately make the right decision for them,” Wojciak
said.
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