Amanda Traxler's (MFA 2006) article featured in My Daily Find
Wednesday, March 17, 2010
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Posted by: Kristen Boddy
Positive results for those with high risk for breast or ovarian cancerBY AMANDA TRAXLER
To Joi Morris, co-author of Positive Results (co-written by Tarzana native Dr. Ora Gordon), knowledge doesn’t just give you power, it gives you options.
And for someone who has a genetic mutation linked to a raised risk
of breast or ovarian cancer, having choices to help manage risk is
paramount.
In mid-2006, Morris tested positive for a genetic mutation on BRCA2 (breast cancer gene 2).
"It’s not until someone says to you that your likelihood of getting
cancer is 50 to 87 percent you can no longer put breast cancer out of
your mind,” Morris said.
According to statistics, about one out of every eight or nine women
will have breast cancer in their lifetime. Of those cases, studies
approximate that about 10% to 15% are due to BRCA1 or BRCA2 mutations;
while as many as another 20% of cases may be linked to other genes,
some of which are known and others that are not.
A key indicator as to whether a woman could possibly have a genetic
mutation on one of the two BRCA genes—which significantly increases
risk of both breast and ovarian cancer—is family history. However, not
all women with a strong family history of breast or ovarian cancer
carry a mutation on the BRCA genes.
Morris’ mother, who had breast cancer when Morris was a junior in college, also carries a mutation.
After grappling with the results of her genetic test, Morris decided
to undergo prophylactic mastectomies in January 2007. But the road to
that decision was not easy.
"It was just hard to find the answers to questions I had about how
to manage my risk. I wanted a book I could dog-ear the pages in and
take to my doctors, and there was no book like that. There were no
books on how to decide about removing health body parts.”
Morris’ sister-in-law came up with an idea.
"She said I should write a book. I looked at her like she had almost lost her mind,” Morris said.
And yet soon Morris had undertaken the task; not long after, Dr. Gordon was on board.
"Initially she came to me as an advisor,” said Dr. Gordon, who is
Director of the Adults Genetics Program at Cedars-Sinai Medical Center.
"I thought it was a fantastically needed book, and I thought it would
be a much more robust and richer book if we wrote it together.”
Released in January 2010, the book has held steady in the number one
or two spot for hot new releases in the breast cancer category on
Amazon.com.
The book’s structure—overall a guidebook interspersed with stories
from Morris’ experience as well as vignettes from other women and men
(as men can also be BRCA-positive)—was an important choice.
"The decisions that those of us in this high-risk community face
aren’t always clear. What’s right for one person isn’t always right for
everyone. Seeing how other people made their decisions helps you feel
less isolated.”
According to Dr. Gordon, the book is a must-have.
"There’s no question that every patient I see who’s high-risk really
needs this book … to decipher incredibly complicated information into
usable data,” Dr. Gordon said.
Making difficult information accessible was a goal of Morris.
"It’s hard stuff,” Morris said. "The statistics are mind-numbing.
And I wanted to convey all the nuances but yet put it together in a way
that people could use and take to their doctors and understand. I think
there’s great value in getting the word out for those who may have a
family history, but who have never thought about it.”
And yet, the book applies to a wider audience too.
"The chapter that I enjoyed the most was the hardest to write—the
risk-modifying chapter,” Dr. Gordon said. In that chapter, readers
learn about general breast cancer prevention and wellness information,
including lifestyle and diet information.
To that end, the book is intended for a wide audience.
"The book targets two audiences,” Dr. Gordon said. "How do you find
women who clearly have family history and help them interpret their
risk? And how do you find everyone else who’s on the train but doesn’t
even realize it?”
Positive Results can be ordered at www.amazon.com or though www.PositiveResultsTheBook.com.
Amanda Traxler is an L.A.-born writer with
degrees in journalism from the University of Kansas and creative
writing from the School of the Art Institute of Chicago. She has been
rediscovering her roots since she returned to the area three years ago
from the wintry Midwest.
http://www.mydailyfind.com/art-culture/positive-results-for-those-with-high-risk-for-breast-or-ovarian-cancer.html
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