Daughter of Breast C Victim Endorses BRCA
From: Robert Cohen (robtcohen_at_msn.com)
Date: 03/07/05
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Date: 7 Mar 2005 06:24:46 -0800
My wife & daughters luv the writer's GILLMORE GIRLS (on the WB
channel?)
www.nytimes.com
copyrighted by the ny times and/or by jessica queller 2005, and
re-posted here in my interpretation of "fair use"
Cancer and the Maiden
By JESSICA QUELLER
Published: March 5, 2005
Los Angeles
FIVE months ago, I took a test for something called the BRCA genetic
mutation, which is often referred to as the breast cancer gene. My
mother had fought off breast cancer and she waged a ferocious battle
against a second cancer, ovarian, when it ambushed her body seven years
later. The cancer won.
After my mother's death, doctors and other cancer-savvy friends
suggested that my sister and I should, at some point, be genetically
tested for the faulty BRCA gene. I was 34 when I took it. I tested
positive.
BRCA mutations are known to cause early-onset cancer, and statistics
show that having the mutation means it's almost certain that I will
develop breast cancer at some point in my life. It also means that I
have a greatly increased chance of developing ovarian cancer. I share
this gene with my mother, but I now have something my mother did not:
the warning that, in all likelihood, cancer will be coming for me.
With tests like these, modern science acts as a crystal ball - warning
us of dark events that may come. We seek such knowledge so we can take
measures to protect against illness. Unfortunately the test for the
BRCA gene is just a decade old, and doctors can offer no definitive
guidance to women diagnosed with a genetic predisposition to cancer. In
the case of BRCA mutations, science has outpaced our understanding of
what to do with the data. Because the test is unaccompanied by any
clear medical recommendations, it doesn't provide solace so much as
open a Pandora's box.
My mother never took the test. In 1993, when she was 51, the test did
not yet exist. As far as she knew, she was a paragon of health when
doctors delivered the crushing news that the barely discernable spot on
her mammogram was breast cancer and had already spread to five lymph
nodes. She was a healthy, vibrant, beautiful woman who ran four miles
along the Hudson River each morning before donning her Manolo Blahniks
and catching the subway to her designer's showroom in the garment
district. She didn't smoke or drink. She was slim and a careful eater.
She hadn't the vaguest notion that she had a genetic predisposition to
cancer.
My mother came of age in the early 1960's, and was a portrait of the
"modern" woman. She had been raised by a single mother in a small house
on the outskirts of Beverly Hills. With little but raw talent and
determination my mother flew east to New York City, and by her mid-20's
she was a successful clothing designer on Seventh Avenue. Along the
way, she found an adoring husband (my father) and gave birth to two
daughters. My mother was among the first generation of women that
balanced family and career. She lived her life freely, choosing her
spouse, her profession and the timing of her children according to the
natural rhythms of her life. Then she was blindsided by cancer.
I see my life as the negative image of my mother's. I'm 35,
accomplished in my profession, vital, healthy - yet weighed down by the
burdensome information of my genetic legacy. It's akin to Eve taking a
bite of the apple. Once you have the knowledge, there's no turning
back.
Although I'm currently cancer-free, the knowledge of my genetic
predisposition requires me to squarely face excruciating life choices -
yet with inexact information. Breast cancer genetic screening is so new
that doctors don't really know what to tell women with BRCA mutations
except to be vigilant about increased surveillance. Preventative
chemotherapy has proven effective for women who carry the BRCA2
mutation, but it does not work for carriers of the BRCA1 mutation (the
one I have.) The surest way to prevent breast and ovarian cancers is to
have your breasts and ovaries removed. Recent studies show that
undergoing these radical surgeries will reduce the risk of inherited
breast and ovarian cancers by 90 percent.
However, I'm single, dating, and I want to have a family. I won't
consider having my ovaries removed until after I've had children
(thankfully the risk of ovarian cancer is slighter than that of breast
cancer). But what about a double mastectomy? Having witnessed the
death-grip of cancer, I'm not inclined to wait around for it to strike,
especially since inexact surveillance machines do not always catch it
at an early stage. Aside from drastically interrupting my life, how
might a double mastectomy adversely affect issues of sexuality? My
romantic future? How early in the dating process do I reveal the
information about my faulty gene, with all its ramifications?
My sister is 31. She's not certain whether she will take the test. She
remarked recently on the diametrically opposed approaches we have
taken: knowing that cancer is often a genetic legacy, I sought out the
knowledge that would permit me to make informed decisions. Knowing that
there is a 50 percent chance she did not inherit the gene, my sister is
not yet willing to give up the luxury that our mother had - to live her
life freely, unaffected by the shadow of illness.
I empathize with my sister's point of view but in spite of the burden,
I believe that women like me are fortunate to have the knowledge,
imperfect as it is, of the likelihood of cancer - to know what our
mothers did not.
I can say without question that my mother would have traded those 51
years of innocence for the dark knowledge that could have potentially
saved her life. My mother would have done anything to live.
Jessica Queller is a writer for "The Gilmore Girls."
Special Offer: Home Delivery of The Times from $2.90/week.
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