MY LIFE Matters - Health Literacy - 32

Cancer Genetics and Prevention
BY EVA MAY, MBA; NIZAR BHULANI, MD, MPH; AND JUDY GARBER, MD, MPH
Breast cancer, a formidable adversary that has touched the lives of
countless individuals and their families, demands another approach-
prevention-as a critical aspect of addressing this widespread disease.
To achieve meaningful progress, it is essential to adopt an approach that
prioritizes empathy, inclusivity, and advanced scientific research.
In this article, we will explore the intentions behind the team at Dana Farber Cancer
Institute department of Cancer Genetics and Prevention's approach to breast cancer
prevention, highlighting our commitment to person-centered care and our mission to create a
bridge of trust and support for those at risk of developing breast cancer. By sharing our stories and showcasing the
health initiatives we have developed for BRCA1 mutation carriers, and all individuals affected by breast cancer, we aim
to demonstrate that we are not only a team of scientists but also a compassionate and empathetic ally in the fight against
breast cancer. Together, we highlight the pivotal role of passionate advocates in improving health literacy, engagement,
inclusivity, and diversity, and how these elements contribute to life-changing breakthroughs in cancer prevention research.
THE MOTIVATION FOR CHANGE
EVA MAY, MBA
In 2008, I was diagnosed with
breast cancer following a
biopsy conducted after suspicious
mammogram results.
After I recovered from the initial shock
and dismay, I was ready to learn about my
disease-and to determine the best course of
action to fight and win my battle with cancer.
My oncologist recommended genetic testing
to determine if I have an inherited mutation
that could be attributed to my diagnosis-I
was " young. " There was no history of breast
cancer in my family, although my mother
had been diagnosed with fallopian cancer
nine months prior to my diagnosis. When I
received the news that I am a BRCA mutation
carrier, I considered myself " lucky " -I felt
that my treatment decisions became clearer
once I knew about my elevated risk of breast
and ovarian cancer. My focus is on clinical
research, as it is such a critical element of
getting new treatments to patients that can
improve outcomes meaningfully. It is also an
area where qualified patient advocates can
really improve the process if we are given the
opportunity and budget to use our patient
community expertise to improve research
design and implementation. I am especially
interested in helping accelerate the development
and promise of novel approaches to
address breast cancer risk assessment and
reduction, early detection, treatment, and
survivorship.
NIZAR BHULANI, MD, MPH
My personal journey into the
realm of breast cancer began
in 2012, when my mother was
diagnosed with stage IV breast
cancer. She passed away just three
months after her diagnosis. Witnessing her
strength and resilience in the face of such
adversity ignited a deep passion within
me to contribute to the fight against breast
cancer. It became evident that prevention
and early detection were key to saving lives
and reducing the impact of this disease on
families. This personal experience continues
to serve as the impetus for my unwavering
dedication to developing effective prevention
strategies.
JUDY GARBER, MD, MPH
My interest in cancer families
began with my own. My
mother was diagnosed with
breast cancer at age 43 when
I was in fifth grade: fortunately,
she lived 40 years, though she had many
complications from treatment. My maternal
grandmother, her sister, her sister's
daughters, and granddaughter all had
breast cancer, and my mother's sister had
papillary serous endometrial cancer. To my
surprise, my mother's genetic testing was
negative, and we still have not explained
our family history. However, I do feel like
I understand something about what it is
like to await a breast cancer diagnosis, and
to expect each mammogram to be " the
one. " My patients have taught me about
courage and trust. They have allowed me
to be part of their journeys, as they live
with remarkable cancer risk and find their
personal paths to safety for themselves,
and especially to spare their children from
pain and loss. They have motivated me to
conduct research to try to improve their
dilemmas, to provide better information on
Dana Farber sees a world where it is possible to prevent or minimize the risk of cancer. Individuals who carry the BRCA1
gene mutation for the first time have a promising pathway to prevent cancer from developing. Clinical trials have started across the
country to look at research to explore making this possibility a reality. Tigerlily Foundation is a proud community partner along with
FORCE (Facing Hereditary Cancer EMPOWERED) in the BRCA-P Study. To learn more, go to https://brcapstudy.org/
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MY LIFE MATTERS
HEALTH LITERACY ISSUE | SUMMER 2023
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