A PERSONAL PERSPECTIVE
By: Sivan Schondorf –
October 2, 2015
vador--"from generation to generation"--the Hebrew phrase heard in
prayers and song. As a grandchild of Holocaust survivors, I understood from a
young age that a thread connects one Jew to another through our history of
shared values, traditions, Torah, endless persecution, and continued survival.
Today, we know this thread goes as deep as our DNA.
In 2000, my 49-year
old aunt, Linda Ben-Ami, originally diagnosed with stage II breast cancer,
received a terminal prognosis. She was the matriarch of our family and was
raising two teenage boys. We were derailed.
deepened when not only Aunt Linda, but my grandmother, mother, and other family
members learned they carried one of the main Ashkenazi BRCA1 genetic
mutations-one that almost guarantees aggressive triple negative breast cancer.
TheBRCA1 mutation also brings with it a high risk of ovarian cancer
and several other elevated cancer risks for both men and women.
In the months that
followed, my grandmother had a first time breast cancer diagnosis, my mother
had a risk-reducing mastectomy with reconstruction and an oopherectomy to
remove her ovaries and fallopian tubes-- and Aunt Linda died.
It was not a good
While we mourned, we
were also desperate for answers about our futures. At 19, I was considered too
young to test. But it was clear that this was a multigenerational health
Five years later, I
learned I also had the BRCA mutation.
From my grandmother,
to my mother, to me. L'dor vador .
I tried to think
about BRCA solely during my biannual checkups, but my concerns would bubble up
when I heard of someone's passing to cancer, or dated someone who didn't know
my BRCA status. I participated in all the recommended studies, but I realized
doctors were performing tests that would catch cancer, not prevent it. I needed
to make a change before I was swallowed up by my feelings, my stress, or by
Just shy of my 28th
birthday, I underwent a risk-reducing double mastectomy with immediate
reconstructive breast surgery. The decision was daunting, but not difficult. I
changed my destiny, lowering my lifetime breast cancer risk from nearly 90
percent to less than 5 percent-lower than the average woman.
People might wonder
if I lost my identity or my womanhood. My only answer: I found a new normal. I
feel healthy and strong, with fabulous aesthetic results. While I sacrificed the
ability to breastfeed, I have the opportunity to see my children grow, to be
there for their simchas and for their life challenges.
My choice was not
the only option. Some women choose lifetime surveillance or chemoprevention
over surgical intervention. Every woman approaches decision-making differently,
based on factors such as age, community and family support, personal
experience, perception of cancer, or unrelated medical conditions. There is no
single right decision, only the right balance of risk for an individual.
Knowing my genetics
early in life gave me a window into my future, and like a "choose your own
adventure" book, I took a different path. However, my family's journey
continues. I monitor my ovaries and will soon enough need to remove them and
deal with the effects and management of early surgical menopause. I have
cousins beginning their own journeys, and one day, I will tell my children
about BRCA. The next steps will be their own.
Although Aunt Linda
died far too young, she saved so many in our family. My family's commitment to
educating others and being proactive with our own health mean she did not die
in vain. We picked up the pieces of our family as best we could and shifted our
focus to healing and health.
When I look at my
sweet daughter, whom we named Maya Linda, I am constantly reminded of the
beauty and love my Aunt Linda carried, that came from my grandmother before
her, and was passed on to us. L'dor vador .
is the Chicago FORCE Volunteer Coordinator(Facing Our Risk of Cancer
Empowered, www.facingourrisk.org ) and a long-time friend of the Center
for Jewish Genetics.
This article was
orginially posted in JUF News,
October 2015. Many thanks to JUF News and Sivan for sharing this story.