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L’ORÉAL PARIS
SURVIVOR DAY
OF BEAUTY
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The Mount Sinai Hospital
One Gustave L. Levy Place, Box #1252
New York, New York 10029
newsletter
THE WOMAN TO WOMAN NEWSLETTER | THE MOUNT SINAI HOSPITAL GYNECOLOGIC CANCER SUPPORT PROGRAM
WOM N
WOM TO
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VOL. 3, NO. 1 | FALL 2008
(Above) Vivian Port,
Woman To Woman
Survivor Volunteer, with
Ann McLaughlin, ovarian
cancer survivor, Mount
Sinai Hospital.
(Left) Myrtice Wooten,
Woman to Woman
Survivor Volunteer,
with Kerry Washington,
Actress and L’Oréal
Paris Spokesperson
showing support
for Ovarian Cancer
Awareness.
WOMAN TO WOMAN LUNCH
WITH THE GYNECOLOGIC ONCOLOGY
DIVISION AT MOUNT SINAI
(Left To Right) Dr. Peter Dottino, Dr. Dimitry Lerner, Valerie Goldfein, Nancy Irizarry,
Joyce Manheimer, Arden Moulton, Dr. Jamal Rahaman, Pamela Herman Elliott,
Julianne Bond, Vivian Port, Dr. Monica Prasad Hayes, Dr. Rudy Segna.
Photo by Dr. William Bradley
know the symptoms
ovarian cancer
1 . Vague but persistent and unexplained
gastrointestinal complaints such as gas,
nausea, and indigestion
2 Pelvic and/or abdominal swelling and/or pain;
bloating and/or feeling of fullness, increased
abdominal size
3 Unexplained changes in bowel habits
4 Unexplained weight gain or loss
5 Frequency and/or urgency of urination
6 New and unexplained abnormal
postmenopausal bleeding
7 Fatigue
8 Backache
uterine cancer
9 New and unexplained abnormal bleeding
10
cervical cancer
A Pap test is used to detect cervical cancer,
not ovarian or uterine cancer.
Every woman should
undergo an annual rectal
and vaginal pelvic
examination.
If an irregularity of the ovary is detected,
or if some of the vague symptoms are
expressed, further testing should be
performed. This may include a CA-125
blood test and a transvaginal sonogram.
According to an article in the
Journal of the American Medical
Association,* studies indicate that
ovarian cancer is not a silent disease;
most women had symptoms in the
year prior to diagnosis. In fact, 89%
of women with stage I/II disease and
97% of women with advanced disease
reported symptoms.
*Goff BA, Mandel LS, Melancon CH, Muntz HG.
“Frequency of symptoms of ovarian cancer
in women presenting to primary care clinics.”
JAMA 2004;291:2705-2712
“you are
not alone”
VALERIE GOLDFEIN
Founder
Program Coordinator
ARDEN MOULTON
Editor
VIVIAN PORT
PHOTOGRAPHY
ALAN MANHEIMER
EDITORIAL ASSISTANCE
KEN ATKATZ
DESIGN
JESSICA WEBER DESIGN, INC., NYC
WOMAN TO WOMAN
ADVISORY BOARD
JAMIE BORIS
CARMEL COHEN, MD
MARY COSGROVE, MD
PETER DOTTINO, MD
ANNE BUSH FEELEY, RN
VALERIE GOLDFEIN
FAITH KATES KOGAN
CYNTHIA LEVY
SARA PASTERNAK, PHD
JENNIFER PECK
JAMAL RAHAMAN, MD
RUDY SEGNA, MD
VIRGINIA WALTHER, LCSW
ROBIN ZAREL, LCSW
Thanks to the Holland
Family Foundation for its
support of the newsletter.
WITH GRATITUDE TO THE
OVARIAN CANCER RESEARCH
FUND FOR THEIR SUPPORT.
WOMAN TO WOMAN
The Mount Sinai Hospital
Department of Social Work Services
One Gustave L. Levy Place, Box #1252
New York, New York 10029
Tel: 212.241.3793
FROM THE EDITOR
“TO KNOW THE ROAD AHEAD,
ASK THOSE COMING BACK.”*
THIS, OUR THIRD ANNUAL NEWSLETTER, HAS A
double focus: educating women and their families about
gynecologic cancers, their prevention, early detection,
treatment options, and associated quality of life issues; and
exploring how scientists are progressing on new discoveries
VIVIAN PORT
*Chinese Proverb
All materials © Mount Sinai Hospital 2008
for their prevention, treatment, and cure.
In this issue: Dr. Tamara Kalir is featured
in the first in a series of planned interviews
with scientists and doctors at Mount Sinai
involved in cutting-edge research; Dr.
Karen Brown, Director of Cancer Genetic
Counseling, tells us what we can learn
from our genes; our Program Coordinator,
Arden Moulton, introduces our new
educational programs; Dr. Jamal Rahaman
describes the many clinical trials now
offered in the Division of Gynecologic
Oncology; and finally, we show how
Woman to Woman survivor volunteers are
serving as “patient teachers” for secondyear
medical students.
I also want to highlight the work of
Barbara A. Goff, MD, whose 2004 article is
referenced on our back cover. Her
4 | A VOLUNTEER’S EXPERIENCE
“I’ve gained more than I’ve given.”
symptom-screening index is being
evaluated by M. Robyn Andersen, PhD,
and colleagues at the University of
Washington, in a pilot study to assess the
value of using it as a screening tool among
normal-risk women. We look forward
to learning the results. Early detection
remains our best defense.
And, again, I urge everyone to contact
their Senators and Representatives
regarding the Ovarian Cancer Biomarker
Research Act, introduced in Congress
a year ago, and still in committee.
Fortunately, funding through the
Department of Defense Ovarian Cancer
Research Program was increased from 10
to 20 million dollars, which is very
encouraging news. We need more.
6 | DR. KALIR AND WOMAN TO WOMAN PANEL PRESENTATION
“Patients’ stories are a contribution to the emotional
component of learning.”
8 | COLLABORATIONS: GENETICS COUNSELING AND TESTING
“What we don’t know really can hurt us...”
| THE NEWSLETTER | 1

interview with
JAMAL RAHAMAN, MD
The Division is a major training center for Fellows in
the field of gynecologic oncology and Dr. Rahaman has
been Director of the Gynecologic Oncology Fellowship
Program since 2006.
“In New York, with eleven gynecologic oncologists,
we have the biggest complement of faculty and the largest
volume of patients treated for benign and gynecologic
cancer surgeries,” he explained.
When Dr. Rahaman gave me a demonstration of
the dynamic and interactive electronic platform he
developed for the Division, it became clear that he is
the Division’s “techie” extraordinaire. He explained how
the platform allows anyone in the Division to prescribe
or track a patient’s treatment, onsite or offsite, allowing
for efficiency and continuity of care. Appointments and
schedules can be accessed as well.
“This past year, there has been an increase from
900 cycles of chemotherapy to 1,300-1,500 cycles, an
increase in volume as well as access to clinical trials,”
he said. A system such as this is designed to make it
all run smoothly. Dr. Rahaman is the Director of the
Chemotherapy Infusion Service.
All Attending Physicians are co-investigators of
trials, so any doctor can enroll patients. Supervisory
responsibility for each trial is divided among the
Attendings. Since 2006, when the Division joined the
2 | THE NEWSLETTER |
Dr. Jamal Rahaman, who is an Associate Professor, Mount
Sinai School of Medicine, and an Attending Physician in the
Department of Obstetrics, Gynecology, and Reproductive
Science since 1998, has been instrumental in helping to expand the
Division of Gynecologic Oncology. In his own words, “The Division has
moved from its reputation for top-notch surgeons to a comprehensive
Division that is also a major research center with investigator-initiated
clinical trials [those initiated at Mount Sinai], national trials through
the Gynecologic Oncology Group [the collaborative national research
organization], and basic science and translational research [scientific
research with possible clinical applications].”
GOG, 15 national clinical trials have opened up at
Mount Sinai. There are clinical trials for ovarian,
endometrial, and cervical cancers. Studies comparing
different chemotherapy agents in various stages of
disease are being conducted in endometrial and ovarian
cancer. There is a study of pre-operative imaging for
cervical cancer. There is a prospective (before disease)
study of women at increased genetic risk for ovarian
cancer, and another study of the effect of zoledronic acid
to build up bone mineral density for the lumbar spine
in women who have elected risk-reducing surgery to
remove both ovaries. In addition, a tissue biorepository
has been developed to freeze and store human
gynecologic tissue to use in studying causes, diagnosis,
prevention, and treatment of cancer—some to go into
a national bank and some into our own. Dr. Rahaman
is very excited to be the principal investigator of two
GOG trials currently open, which allow women with
ovarian cancer free access to Avastin (Bevacizumab)
in combination with standard chemotherapy for firstline
(GOG 218) and second-line therapy (GOG 213).
Mount Sinai participated in international clinical
trials that led to development of the HPV vaccine
Gardasil by Merck, which was approved two years ago.
At this time, Mount Sinai has two investigational studies
about vaccines. Dr. Rahaman, who is co-investigator
of these trials with Dr. Rhoda Sperling—Professor
and Vice Chair of Research for the Department of
Obstetrics, Gynecology, and Reproductive Science, and
Professor of Medicine, Infectious Diseases—explained:
“We are working with both Merck and Glaxo-Smith
Kline. Glaxo-Smith Kline has another vaccine that’s not
approved in the US yet, but will be, hopefully, within the
next two years. Merck is now looking at a new vaccine
with nine strains versus the current four strains. That
trial is open right now.”
There is a tremendous breadth of clinical trials
taking place now, because of the Division’s membership
in the Gynecologic Oncology Group, established
by the efforts of Drs. Dottino and Segna in 2006.
The Division holds a monthly translational research
meeting with scientists and doctors from different
departments, including Breast and
Oncological Sciences, to brainstorm
new projects. The Fellows work in
different labs within Oncological
Sciences. Dr. Rahaman expects that
this exciting research will translate
into cutting-edge trials offered
only here at Mount Sinai, resulting
in the development of improved
treatments and potential cures.
Many may not know that
Dr. Rahaman had completed a
fellowship in Cardiothoracic and Vascular Surgery at
the Texas Heart Institute in Houston, Texas, with Dr.
Denton Cooley as his mentor, before completing his
Obstetrics and Gynecology Residency and Gynecologic
Oncology Fellowship at Mount Sinai. Following his
training, Dr. Rahaman left Mount Sinai to be an
Attending Physician at Williamson ARH Hospital
in South Williamston, Kentucky, where he became
Chairman of the Department of Obstetrics and
Gynecology. Three years after leaving Mount Sinai,
he returned to become Director of the Gynecologic
Oncology Service at Mount Sinai affiliate Elmhurst
There is a tremendous
breadth of clinical trials
taking place now, because
of the Division’s membership
in the Gynecologic Oncology
Group, established by the
efforts of Drs. Dottino and
Segna in 2006.
Medical Center, where he reorganized and developed
an expanded comprehensive department. In 2005, the
service was transferred to one of the Junior Faculty who
was trained in the Division’s fellowship program.
In his many years of service at Mount Sinai, Dr.
Rahaman has filled leadership, training, and research
roles. However, he has always engaged in a vast amount
of direct clinical work, making him one of the most
experienced gynecologic oncology surgeons in the
country. Dr. Rahaman has also been a member of many
administrative committees within the hospital and
medical school.
He has written numerous publications in national
and international journals, several book chapters in
the field of gynecologic oncology with Dr. Carmel
Cohen, and most recently, a chapter with Dr. William
Bradley, “Pediatric Gynecologic
Cancers,” in Pediatric, Adolescent
and Young Adult Gynecology.
His lectures and oral conference
presentations include many on the
use of laparoscopy. Recently, he
has been credentialed to teach and
perform da Vinci Robotic Surgery
for gynecologic cancers.
In the last six to eight months,
the Division has started to do more
robotic surgery. All surgeons in the
Division are now trained to perform it. Laparoscopic
robotic surgeries are done with endometrial, cervical,
and selected cases of ovarian cancers.
Dr. Rahaman received awards in college, the
University of Cambridge, and medical school,
University of the West Indies, as well as teaching and
peer recognition awards throughout his career.
With all that Dr. Rahaman does, I hope he has
enough time to enjoy his beautiful family: his wife,
Kathleen—a pharmacist—and two children, a daughter
age 11, and a son, age 8. They live in Bergen County
with their two Bichon Frises. —VIVIAN PORT
| THE NEWSLETTER | 3

a volunteer’s
EXPERIENCE
survivors &
VOLUNTEERS
In the spring of 2001 I was the picture of wellness.
I was engaged to be married. I had recently lost
45 pounds and felt better at 40 than I had at 25... but I
had ovarian cancer and didn’t know it.
After experiencing pelvic pain during menstruation
for three months, I was diagnosed with a benign ovarian
cyst. My gynecologist was scheduled to remove it with a
minimally invasive device called a laparoscope, and a
gynecologic oncologist would be available “just in case.”
And then my world came crashing down. When
I went into surgery, I noticed a big clock in the presurgery
suite that said 8:30am. When I awoke, the first
thing I noticed was another big clock in the recovery
room that said 5:30pm. So, I knew I had cancer.
It was ovarian cancer stage one. Since it was caught
early, I didn’t have a complete hysterectomy, but I would
need chemotherapy.
There are no words to describe how it feels to be told
that you have cancer. Shocked and devastated are too
mild. It was as if someone had hit me between the
eyes with a brick, made me get back up, and then
hit me again.
So, my wedding was postponed and I began chemo.
During chemo, I worked pretty much full time.
I surprised my friends and family by not being upset
when my hair started falling out. As a matter of fact, I
had my fiancé Chris shave it off and then we celebrated
with a fun night out at my favorite restaurant. I never
got a wig and pretty much did everything I wanted to
do that summer.
Chemo ended in September, and in November Chris
and I were married. I had a second-look surgery in July
2002, and stage one uterine cancer was found, so I had a
complete hysterectomy.
Well that’s that, I thought. Two stage-one cancers.
Twice blessed. But I couldn’t shake the nagging question
“is that all there is?” I wondered how I could go through
this life-changing incident and just have life go on
normally when it wasn’t normal at all.
One day, I discovered an online ovarian cancer
support group, and the more I connected with those
women in cyberspace, the more at ease I felt about
my cancer diagnosis. It was as if I was being healed from
the inside out.
Then in 2003 I got a call from Arden Moulton about
joining a new program at Mount Sinai called Woman to
Woman. The very first time I met with a patient, I walked
out of her room and cried. I cried because I felt that this
was what I was meant to gain from my cancer experience.
I took the worst thing that ever happened to me and
began helping other people. I’ve met the most incredible
families over these past five years and I’ve gained more
than I’ve given. Many of the patients have become
friends. Many have died. But in the end, I know I’ve
made a difference in people’s lives and what could be
better than that? —PAMELA HERMAN ELLIOTT
WOMAN TO WOMAN UPDATE
FROM ARDEN MOULTON,
PROGRAM COORDINATOR
On behalf of the survivor volunteers,
I want to thank all of you who
have generously welcomed us
into your lives. Our mission is
to provide support and information to women
in treatment for gynecologic cancer and their
families. We hope our remarkable volunteers
have helped make your difficult journey easier
to manage.
Allow me to update you on our very
busy year. After undergoing training in
June, Marilyn Aronson, Andrea Licari,
Marie Sanford, and Myrtice Wooten were
welcomed into the program. There are
now 15 Woman to Woman volunteers,
representing a wide demographic, cultural,
and medical cross-section of women, all
ARDEN MOULTON ready and able to provide one-to-one
support to our diverse patient population.
Woman to Woman volunteers, who range in age from
30–65, are all survivors of gynecologic cancer. Eight
volunteers are currently employed: a real estate agent,
an accountant, the head of marketing for a large
fashion conglomerate, a pediatrician, and two mental
health professionals. Two volunteers are Spanishspeaking,
and one of them speaks French as well.
The other seven are retired, with very busy volunteer
and family lives.
In addition to our one-to-one mentoring,
Woman to Woman has added programs to
address our mission to educate and inform.
On November 15th, we partnered with Cancer
Care to host a one-day conference for couples
impacted by gynecologic cancer (of course, there
was information for single women, too). This
unique conference allowed partners to address
issues common to both patient and caregiver.
In the morning session, women interacted with
an expert on self-esteem and body image, while
their partners met with Floyd Allen, a Cancer
Care social worker who specializes in sexuality
and intimacy. Afterwards, couples came together
to learn about nutrition and get some cooking
tips from Esther Trepole, Director of Nutrition
at God’s Love We Deliver. The afternoon session
included information on workplace issues and
caregiving. We hope this conference was an
enjoyable as well as informative experience for
individuals and couples.
Woman to Woman is producing an interactive
Web-based education system for women
in treatment for gynecologic cancer and their
families. Our first program will address the
needs of women with ovarian cancer, followed
by programs on uterine and cervical cancers.
There’s a great need for reliable, accessible information
on gynecologic cancer, its treatment,
and the emotional and practical issues associated
with diagnosis. This user-friendly system will be
a groundbreaking new way to provide accurate,
helpful information to families. Our consultants
on the site are experts in health literacy, Internet
technology, and research. We hope to have it on
the Web within the next six months.
Please contact us with any personal questions
and concerns, or other programming ideas that
you may have. We are here for you.
4 | THE NEWSLETTER |
| THE NEWSLETTER | 5

WOMAN TO WOMAN VOLUNTEERS
TELL THEIR DIAGNOSIS STORIES TO
SECOND-YEAR MEDICAL STUDENTS
DR. KALIR’S
EXCITING RESEARCH
Dr. Tamara Kalir, Associate Professor of
Pathology and Course Director of “Sexual
and Reproductive Health and Disease,”
had wanted to include a patient panel in her course
to heighten awareness of, and sensitivity to, the
patient’s point of view. As
soon as Woman to Woman
began, Dr. Kalir worked
closely with Arden Moulton,
the Woman to Woman
Program Coordinator, to
organize the details.
In my interview with
Dr. Kalir, she expressed
deep appreciation for all
the survivor volunteers
who participated in the
past five years, including
Valerie Goldfein, the late
Silvana Keegan, Vivian
Port, Joyce Manheimer,
Jane Lury, Joan Brown,
Pamela Herman Elliott,
Nancy Irizarry, and Linda
Newson.
“The student response
has been very positive,” she
said. “Conventional teaching
is intellectual; patients’
stories are a contribution to
the emotional component
of learning. Everybody has
a different story. Each one
is so individual. In the classroom, we present
standard medical teaching and the Woman to
Woman panel follows. This allows us to drive the
intellectual points home emotionally.”
Survivor volunteers tell their stories so that
students can hear firsthand not only how difficult
6 | THE NEWSLETTER |
(Left To Right) Nancy Irizarry, Pamela Herman Elliott,
Joyce Manheimer, and Dr. Tamara Kalir.
Nancy Irizarry, Survivor Volunteer, speaking with
a medical student after panel presentation.
it is to confront a cancer diagnosis, but also, in
the case of ovarian cancer, how difficult it can be to
diagnose it correctly and quickly.
“Because ovarian cancer is such a difficult
clinical diagnosis, it is important to consider it in
the differential diagnosis,”
Dr. Kalir said. “A delayed
diagnosis may negatively
impact prognosis.”
Many in the class will
become primary care physicians,
and we hope that
our personal stories will
remain with the students.
The students were told
about the survivor volunteers’
symptoms and their
experiences with missed
diagnoses and insensitive
doctors. Medical students
heard about our feelings
of confusion and fear,
sadness and anger. One of
the women related how
she was engaged to be
married when diagnosed
at age 36. Another
described how she had
just finished chemotherapy
for breast cancer
when she was diagnosed
with both uterine and
early-stage ovarian cancer.
Another volunteer told of gastrointestinal problems
that her doctors did not recognize as symptoms of
ovarian cancer. Yet another told how she was given
her diagnosis abruptly and without compassion. Dr.
Kalir sums it up perfectly when she says, “We want
them to be humanitarians as well as good scientists.”
Dr. Kalir herself is an excellent role model for the
students. She’s also an excellent teacher. I know that
because she explained so clearly to me the exciting and
original ovarian cancer research she’s working on with
Drs. Peter Dottino, Stave Kohtz, and Yayoi Kinoshita.
Funded by the Gynecologic Cancer Research Fund in
the Division of Gynecologic Oncology, the research
is designed to help doctors better understand what
causes ovarian cancer at the molecular biology level
and to discover new therapies to offer patients. What is
so innovative is that they are focusing on “the nuclear
membrane pore complex.”
The pore is a multiprotein structure that forms
a hole in the double-layer membrane of the nucleus
of a cell (all body tissue is made up of hundreds
of thousands of cells, and the nucleus is like the
command center for the cell). The pore is important
in information exchange between the nucleus and
the rest of the cell (the cytoplasm). The pore can be
considered a gateway of information exchange.
Because of the role it plays, it seems that it should be
Schematic diagram of a nuclear pore, showing the
doughnut shape with pore (opening) in the center.
Nuclear pore seen with an electron
microscope, magnified 200,000 times.
critical in regulating cell growth in the development of
cancer, since cancer is a dysregulation of growth. The
hypothesis is that in cancer, the pore might not be
bringing correct information to the cell.
“Recently, we discovered that the pore appears to
be a critical regulator of cell growth in the G1 phase
of the cell cycle,” Dr. Kalir explained. “We are looking
at one of the proteins within the pore complex
called NUP 62 that sits in the center. It holds the pore
intact.” Dr. Kinoshita has developed ovarian cancer
cell lines that are deficient in this protein and their
pores are larger. These cells grow differently than
other cancer cells.
“This type of research holds promise for developing
new drug therapies for ovarian cancer,” explained
Dr. Kalir. “For example, if one protein in the pore
complex is either abnormal or missing, we might be
able to replace that protein.”
Since there are over 200 proteins in the pore, there
are many possible approaches to try.
Let’s hope that the initial discovery involving
NUP 62 will provide the key to unlocking very
important information for everyone awaiting a
breakthrough in ovarian cancer research. Dr. Kalir
and her team may have made a promising start
toward that goal. —VIVIAN PORT
| THE NEWSLETTER | 7

collaborations
GENETICS COUNSELING
AND TESTING
INTERVIEW WITH
KAREN BROWN, MS, CGC
One of the goals of our newsletter and Woman
to Woman is to educate women about their
health and ways to reduce the risk of disease.
One option for women to educate themselves
is to see a genetic counselor. But I have met many women
who express reluctance to do that. I understand because
I was apprehensive myself. What would I learn that would
affect my future or my children’s future? However, I put my
fears aside in order to learn as much as I could that might
help our family. What we don’t know really can hurt us,
especially when it comes to hereditary cancers.
Most cancers are not hereditary. In fact, only 10% of
ovarian cancer cases and 5–10% of breast cancer cases
are linked to an inherited predisposition. In some
families, the tendency to develop these cancers is due
to an inherited change, or genetic mutation, in what
are called the BRCA1 or BRCA2 genes (BRCA stands
for Breast Cancer). The genetic test for mutations in
these genes requires drawing a small sample of blood
from the arm. But before any testing is done, a certified
genetic counselor discusses the pattern of cancer in the
family and whether testing is appropriate to consider.
I met with Karen Brown, MS, CGC, Director
of Cancer Genetic Counseling in the Department
of Genetics and Genomic Sciences at Mount Sinai,
who was generous with her time and very helpful in
explaining a complex subject. “People need a certain
comfort level to do genetic counseling and testing,” she
said. “Genetic counseling is an educational resource. It
is a process to assist people in deciding whether genetic
testing is important for them.”
8 | THE NEWSLETTER |
KAREN BROWN, MS, CGC
Director of Cancer Genetic Counseling
I asked Ms. Brown who should
consider BRCA testing.
Anyone who has had ovarian
cancer, regardless of family
history
Any Ashkenazi Jewish woman (Jews of
Eastern European or German origin) who has
had breast cancer
Any woman, regardless of ethnicity, diagnosed
at age 50 or younger with breast cancer or with
two breast cancers at any age
Anyone who has a strong family history of breast
and/or ovarian cancer
Any man with breast cancer
Ms. Brown further explained that it is good to
start testing with the person in the family who has
had the cancer.
She told me that the lifetime risk of developing
ovarian cancer for the general population is 1–2% or
1 in 70. Among Ashkenazi Jews, 30–40% of ovarian
cancer is attributed to inherited mutations in the
BRCA1 and BRCA2 genes. In non-Ashkenazi women,
10% of ovarian cancer is due to a BRCA mutation. It
is estimated that in the US general population, 1 in
800 individuals has a BRCA mutation compared to
approximately 1 in 40 Ashkenazi Jewish individuals.
The likelihood that a mutation is present in a family is
increased by the occurrence of breast and /or ovarian
cancer in that family.
Risks associated with BRCA1 or BRCA2 are
somewhat different from each other, although both
predispose to breast and ovarian cancer. It is important
to understand that not all women who inherit an
altered gene will develop breast or
ovarian cancer. Testing only provides
information about risk; it does not
indicate whether or when cancer will
actually develop.
BRCA1 and BRCA2 mutations
confer up to an 85% lifetime risk of
developing breast cancer, compared
to the general population risk of
12%. The lifetime risk of developing
ovarian cancer for BRCA1 carriers is
up to 60%, compared to the general
population risk of 1–2%. A BRCA2
mutation confers up to a 27% lifetime
risk for ovarian cancer.
BRCA mutations are associated
with a somewhat increased risk for
certain other cancers as well, including
pancreatic cancer in men and
women as well as prostate and breast
cancer in men.
For women with a BRCA
mutation, current recommendations
include frequent screening for
breast cancer with self and clinical
examinations, mammograms, and
breast MRI. For ovarian cancer,
screening with transvaginal ultra
sound and CA-125 measurement is available, but not
highly successful in detecting it at an early stage when
it is most curable. Therefore, to significantly reduce the
risk of ovarian cancer, women with a BRCA mutation
are advised to have their ovaries removed by age 35–40,
or once childbearing is complete. Because of the high
risk of breast cancer with BRCA mutations, some
women choose prophylactic mastectomy to reduce this
risk.
For individuals with a strong family history
of cancer, without detection of a BRCA mutation,
preventive guidelines need to be discussed with one’s
doctor. Recommendations may also include more
ANDREA LICARI
SURVIVOR VOLUNTEER
Woman to Woman BRCA Stories
“It was a no-brainer,” is how Andi described her decision
to have a prophylactic mastectomy, after learning she was
BRCA positive. Her mother’s family was Jewish, originally
from Russia. Andrea had been treated for ovarian cancer,
her mother and grandmother had breast cancer, and
so she was not surprised at her test results. However,
her husband was.
She said “You only have a problem when you have
choices. I had no choice, so there wasn’t a problem.” She
thought, “I have to take the chance of being aggressive
against cancer because it’s the only way to secure the
future of my young children and my husband.”
Andrea’s husband lost his first wife young to cancer.
She did not want to take a chance that this might
happen again.
Her husband became very supportive of her decision
and she feels that having a very positive husband is critical.
Her reconstructive surgery was so good, she said, that
you cannot detect any difference. She feels lucky about
the cosmetic results, and most of all, for having peace
of mind.
| THE NEWSLETTER | 9

frequent screenings or screenings to begin at an earlier
age than for the general population.
Ms. Brown indicated that women do not have to
be patients at Mount Sinai to utilize the services of the
Genetics Department. Physicians may refer patients
for genetic counseling, but many come on their own
initiative. This confirms what I have learned talking to
many women during the years since my diagnosis.
In addition to genetic testing for BRCA mutations,
some women with endometrial (uterine) or
ovarian cancer are offered genetic testing for Lynch
Syndrome, usually referred to as HNPCC (Hereditary
Nonpolyposis Colorectal Cancer). HNPCC is a
condition in which a tendency to develop colorectal
and certain other cancers is inherited (Nonpolyposis
means that the colorectal cancer can occur when
only a small number of polyps are present in the
colorectal region or when polyps are not present
at all). HNPCC accounts for 2–3% of all colorectal
cancer; however, polyps in these individuals can
ROBIN ZAREL
ADVISORY BOARD MEMBER
Woman to Woman BRCA Stories
Robin was 36 when she had her first breast cancer in
1991, and 39 when diagnosed with ovarian cancer.
A few years after her treatment for ovarian cancer,
she happened to receive a brochure in the mail from
the Strang Cancer Center about genetic testing. She
decided to look into it. Robin had no family history of
either cancer. “I wanted to know why all this happened
to me,” she explained.
Robin tested positive but did not elect to have a
prophylactic mastectomy at that time. However, when
she developed a second primary cancer in the same
breast in 2004, she elected to have a double mastectomy.
It has given her peace of mind. And she’s quite confident
about her ovarian cancer. Although she was diagnosed
in Stage III, she has survived 15 years.
become cancerous more quickly than in the general
population. There is up to an 80% chance that a
man or woman with HNPCC will develop colorectal
cancer over his or her lifetime and up to a 60%
chance that a woman with HNPCC will develop
uterine cancer. Additionally, the lifetime risk of
ovarian cancer is approximately 10% for women
with HNPCC. Other cancers linked to HNPCC
are those of the stomach, small intestine, bile duct
and gallbladder, urinary tract, and pancreas.
Three of the genes that account for the majority of
HNPCC (MLH1, MSH2, and MSH6) can be analyzed
through a blood test. Testing is considered according
to the pattern of cancer in a family. Families with
three or more cases of HNPCC-related cancers
in two or more generations, with at least one
affected family member diagnosed under the
age of 50, are considered to have HNPCC. Testing
is also appropriate for individuals diagnosed with
two HNPCC-associated cancers or colorectal or
uterine cancer under the age of 50.
Unlike the BRCA mutations, HNPCC
is not more common among people of
Jewish descent.
Knowledge of this condition can
help determine a need for frequent
cancer screenings, preferably starting at
an early age. Genetic testing, however,
is not available for all HNPCC-causing
genes. In addition, in some high-risk
families, genes other than those associated
with HNPCC may account for the
increased colorectal cancer risk. Therefore,
in high-risk families, where no
mutation has been detected, individuals
need to consult with their doctors
to determine the best screening practices
to follow. For women with a personal
and/or family history suggestive of HN-
PCC, besides an annual gynecological
exam and early, frequent colonoscopies,
doctors may recommend pelvic ultrasounds
and/or uterine biopsies to screen
for cancer of the uterus or ovaries.
Both HNPCC and BRCA mutations
are inherited in an autosomal
dominant pattern. That means that each
time a person has a child, there is a 50%
(or 1 in 2) chance that the child will inherit
the mutation or condition. Children
who do not inherit it cannot pass it on
to their own children; it does not “skip
generations.” Again, not everyone who
inherits the BRCA mutation or HNPCC
will develop cancer. Siblings of a person
with HNPCC or a BRCA mutation have a
50% chance of having inherited it.
Many insurance companies cover
the cost of testing and most people
use their insurance, Ms. Brown said. Some people
prefer to pay out-of-pocket for genetic testing
because they worry that the information might be
used against them if it is included in their medical
records. However, federal and state laws are in
place to help protect individuals from genetic
discrimination. Genetic test results may not be used
by a health insurance company or employer when
making decisions about coverage or employment.
Now, to summarize the reasons for considering
undergoing any type of genetic testing: Many
women ask, why be tested if they already have
developed cancer? Ms. Brown explains that it helps
people make better and more informed medical
management decisions. Gaining knowledge about
genetic risk allows one to increase surveillance
(medical observation) and take preventive measures.
JOYCE MANHEIMER
SURVIVOR VOLUNTEER
Woman to Woman BRCA Stories
“I wanted more information because I had three cancers:
breast, uterine, and early-stage ovarian, within two years.
I wasn’t reluctant to have the tests. If they are available
to me, I would be foolish not to take advantage of them,”
Joyce told me.
She had the BRCA and HNPCC testing. Joyce learned
that she tested negative but no longer thinks about how
all this happened to her. Her mother had three different
cancers and did not dwell on it after she was treated. Joyce
adopted her mother’s attitude; that is, “I am a healthy
individual, I was treated, and I move forward.”
In addition, pinpointing an inherited cause of cancer
can allow informative testing for other relatives.
Testing has the potential to reduce uncertainty and
anxiety about who in the family is at increased
risk for cancer.
One purpose of Woman to Woman is to inform and
educate in order to empower women.
It has been my experience that discussion of
genetic counseling and/or testing is feared and
avoided when it should be understood and utilized to
save our lives and those of our family members. Just as
we need to know symptoms, we need to understand
newly discovered information. Genetic counselors,
along with our doctors, can teach us and help us
to appreciate whatever knowledge does exist about
our illnesses. —VIVIAN PORT
| THE NEWSLETTER | 11
(Left to Right) Arden Moulton, LMSW, and Alison Snow, LCSW, Recipients of the
Susan Blumenfield Award for Clinical Excellence; Maura Surnamer, President of
the Auxiliary Board; and Dr. Susan Bernstein, Director of Social Work Services.
ARDEN MOULTON, LMSW, WOMAN TO WOMAN
PROGRAM COORDINATOR, RECEIVES ONE OF THE
TWO DR. SUSAN BLUMENFIELD AWARDS FOR
CLINICAL EXCELLENCE
At the Department of Social Work Services Grand Rounds on March 11 of this year,
our dear Arden received a very special award. Maura Surnamer, President of the
Auxiliary Board, honored her with one of two Dr. Susan Blumenfield Awards, while
Alison Snow, LCSW, an inpatient oncology social worker, received the other.
Ms. Surnamer read comments written by those who nominated both Arden and
Alison. She noted that Alison, who has been at Mount Sinai since 2004, has established
herself as “an exceptional patient advocate” who is dedicated to oncology services and
works to insure their prominence at Mount Sinai. “Alison is the real thing,” she said,
“caring, compassionate and self-motivated.” Woman to Woman survivor volunteers
know personally how important a caring, compassionate, and effective social worker is
at this difficult time. Congratulations from all of the survivor volunteers, Alison.
Arden was described as the creative force behind Woman to Woman. As one
colleague noted, “Arden took the vision of a peer-to-peer support initiative and made
it flourish.” Another said that Arden has built Woman to Woman into a prototype for
peer-to-peer support programs nationwide.
We volunteers feel so strongly that she makes the work we do possible, on a very
personal level. One volunteer said that “Arden literally helped save my soul, enabling me
to craft a meaningful life after cancer…She has guided me with a firm but gentle hand
toward the realization that by helping other women, I am helping myself.”
When I meet with patients, their faces light up when Arden’s name is mentioned,
even after surgery or during chemotherapy. It is no wonder that the Auxiliary Board
selected our very own Arden to receive the award in its inaugural year. All the Woman
to Woman survivor volunteers are very thankful for her exceptional personality and
professional leadership. Congratulations, Arden! —VIVIAN PORT