New studies in the last year
have shone an even greater light on the risks in the Jewish community related
to mutations in the BRCA1 and BRCA2 genes.
The BRCA
genes (commonly pronounced BRAH-CAH) are named for BReast CAncer, because it is
mutations in those genes that cause hereditary forms of breast cancer. In the
general population, BRCA mutations occur in about 1 in 400 persons. Among
people of Ashkenazi descent, that number rises to 1 in 40-a tenfold
increase.
Women with BRCA mutations face a 56-67 percent lifetime risk
for breast cancer, and a 27-44 percent lifetime risk for ovarian cancer,
significantly higher than for persons without these mutations. But those
figures alone don't tell the whole story about BRCA, because of two facts not
widely known outside of the medical community.
The first is that BRCA
mutations increase individual risk for several kinds of cancer in addition to
breast cancer. Genetic research links BRCA mutations to certain hereditary
forms of prostate and pancreatic cancer as well.
The second is that
while breast cancer is more common in women, men get breast cancer too. Among
men with BRCA mutations, the lifetime risk can be up to 7 percent, many times
higher than for men without the BRCA mutations.
Men in general seek
much less medical care, particularly preventative care, than women. Combined
with the general lack of awareness about male breast cancer, we find a serious
awareness gap within our community around these issues.
Fortunately, new
partners have recently emerged to help bring more attention to this rarely
articulated and poorly understood problem with two forthcoming
documentaries.
Inspired by her own family's story, Lori M. Berlin is
the producer and director of Men Have Breasts Too. Berlin, who shared
her own story recently on the Center for Jewish Genetic's blog, describes the
project as "a labor of love" to honor her cousin, her family, and the many
people she met along the way when dealing with her own positive test for a BRCA
mutation. The film features the stories of men and their families dealing with
male breast cancer.
Another friend of the Center, Alan Blassberg, is
making Pink & Blue. Besides exploring BRCA risks in general,
Blassberg's film sheds light on needed cultural and medical changes necessary
to help men get the help they need without shame or embarrassment. The name of
the film alludes to these issues, with the color pink dominating the discussion
of breast cancer in the U.S.
Both of these films originate with the
lived experiences of Jewish families. We view them as important contributions
to awareness of BRCA mutations in general and male breast cancer specifically
in the Jewish community. At the Center, we plan to do our part too.
As
part of our expanded education and programming related to hereditary cancer,
the Center will present a large-scale community education event this fall, on
Oct. 14. The program, designed for individuals with questions and concerns
about BRCA, will feature a panel of local experts and a keynote presentation by
Dr. Susan Domchek of the Basser Center for BRCA. The event will be held in the
northern suburbs on Oct. 14 at a to-be-determined venue.
For anyone of
Ashkenazi origin, learning more about BRCA may prompt more questions than
answers. One we hear frequently is: "Should I get screened?"
The
decision to seek screening is a personal one. For those with a personal or
family history of cancer, screening may be the right approach. For persons
without any such history, the answer may be more complicated. Some researchers
advocate that all women of Ashkenazi descent receive screening, but this
recommendation remains controversial.
For anyone considering screening,
we at the Center advocate taking an approach that starts with a conversation
with a genetic counselor who can take a family history, describe in detail what
a screening test can and cannot tell you, and help you think through what you
will do with the information depending on your results.
Our Center does
not perform BRCA screening, but we can help get you started by connecting you
to the right resources.
For more information about our upcoming BRCA
event and other issues related to Jewish Genetic Health, visit the Center's
website at www.jewishgenetics.com
.
Jason Rothstein, MPH, is Director of the Center for Jewish
Genetics. The Center for Jewish Genetics is a cooperative effort of the Jewish
United
Fund/Jewish Federation of Metropolitan Chicago and the Ann
& Robert H. Lurie Children's Hospital of Chicago.