woman to woman

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W IN T E R 2 010
THE WOMAN TO WOMAN NE WSLETTER | THE MOUNT SINAI HOSPITAL GYNECOLOGIC CANCER SUPPORT PROGRAM
FROM THE EDITOR
“you are
not alone”
“TO K N O W TH E R O A D A H E A D,
ASK TH O SE C O MIN G B A C K.” *
VA LERIE G O LD F EIN
F o un d er
Pro g ra m C o ordin a t or
A RD EN MO ULTO N
E dit or
VIVIA N P O RT
PH OTO GR A PHY
A L A N MA NHEIMER
E DIT O RI A L A SSISTA N C E
KEN ATK ATZ
W OMA N TO W OMA N
A DVISO RY B O A RD
J A MIE B O RIS
C A RM E L C O H E N, M D
M A RY C O S G R O V E, M D
P E T E R D O T TIN O, M D
A N N E B USH F E E L E Y, R N
VA L E RIE G O L D F EIN
F A IT H K AT E S K O G A N
C Y N T HI A L E V Y
S A R A PA ST E R N A K, P H D
J E N NIF E R P E C K
J A M A L R A H A M A N, M D
R U DY S E G N A , M D
VIR GINI A W A LT H E R, LC S W
R O BIN Z A R E L, LC S W
Thanks to the Holland
Family Foundation for its
sup p ort of the newsletter.
W ITH GR ATITUD E TO THE
OVA RIA N C A N CER RESE A RCH
F UN D F O R THEIR SUPP O RT.
WOMAN TO WOMAN
Th e Mo unt Sinai H ospit al
D e p art m e nt of So cial W ork Services
O n e G ust ave L. Lev y Pla ce, B ox #1252
N e w York, N e w York 10 0 29
Tel: 212.241.3793
VIVIA N PORT
Our fourth newsletter reports the latest ovarian cancer
research developments in the Division of Gynecologic
Oncology; breast and cervical cancer community
outreach programs of Mount Sinai’s Department of
Oncological Sciences; and, on a lighter but very
gratifying note, wonderful fundraising parties to benefit
both ovarian cancer research and Woman to Woman.
In the last newsletter I wrote that the
Department of Defense’s special Ovarian
Cancer Research Program budget was
doubled from $10 to $20 million for 2009.
In this year of slow economic recovery, the
funding remained close to last year’s, with a
$1.75 million decrease. Ovarian cancer
research at the National Cancer Institute,
where most federal cancer research money
is appropriated, received $100 million, less
than 2% of the $5.1 billion total NCI
budget for 2009.
That’s why private philanthropy is so
critical for research on ovarian cancer, the
least common and the most lethal of the
gynecologic cancers. Limited research
funding was also the case for uterine cancer.
The 2008 NCI budget allotted it only $17
million, although it is one of the ten most
common cancers and the eighth leading
cause of death among women (the
American Cancer Society estimated 42,000
new cases and 7,400 deaths in 2009).
Forty years ago, cervical cancer used to be
the leading cause of cancer death among
women in the US. Each year it is estimated
that 12,000 women are diagnosed and close to
4,000 women die, with significant statistical
differences between white and minority
women. This discrepancy is addressed in the
newsletter article about community outreach
programs in Harlem and East Harlem. The
NCI investment in cervical cancer research is
approximately $80 million dollars.
Unfortunately, cervical cancer is
enormously prevalent in the developing
world due to the lack of good medical care
including Pap tests. The overall change in
cervical cancer death rates in the US during
the last forty years dramatically
demonstrates the beneficial effect of an
accurate screening test. That remains our
hope for current research in ovarian cancer.
At the same time, women need to be
aware of what we do know about signs and
symptoms of ovarian cancer. The
Gynecologic Cancer Education and
Awareness Act, Johanna’s Law, received $6.8
million for 2010, an increase of only 0.2%
from 2009 levels. Johanna’s Law authorizes a
national media campaign to spread
awareness about all gynecologic cancers.
This campaign is so needed. In a recent
survey by the National Ovarian Cancer
Coalition, 83% of women said their doctors
had not discussed the symptoms of ovarian
cancer with them, and 63% of Americans
believe — incorrectly — that a Pap smear
can diagnose it.
Woman to Woman sends a personal
message to doctors reading this newsletter.
PLEASE help in the effort to educate women
about gynecologic cancers, especially
ovarian cancer. Break the Silence on Ovarian
Cancer — that is the motto of the National
Ovarian Cancer Coalition. Please call them
at 1-888-OVARIAN to order bookmark
cards that list symptoms. ■
*Chinese Proverb
A ll materials © Mount Sinai H ospital 2 010
| THE NE WSLETTER | 1
interview with
JOHN MARTIGNETTI, MD-Ph D
Making a difference in ovarian cancer is now Dr. John
Martignetti’s personal challenge, and are we ever fortunate!
Dr. Martignetti has worked for over 20 years in research on
other cancers and illnesses (of prostate, liver, breast, lung,
bone), but is now devoting himself to finding a pathway to
genetic discoveries for ovarian cancer.
“SO LITTLE IS KNOWN ABOUT THE GENETIC
ORIGINS AND DRIVERS OF OVARIAN CANCER,” he says.
“With the advent of next-generation technologies, we have
been able to set in motion a plan for making a difference in this
disease, specifically through the sequencing and analysis of
these tumors. At the same time, we need to build the
framework for scientists to take the findings to the next step—
directly to a woman with ovarian cancer and, even more
hopefully, to women before they develop ovarian cancer.”
Tumors are being “decoded, base by base,” Dr. Martignetti
says. No small feat given that each tumor cell has 3 billion
bases of DNA to decode and that only a few changes can
mean the difference between normal and cancerous. His
research team and the Division of Gynecologic Oncology are
working to understand what messages get altered to
effectively hijack a normal cell and slowly but surely turn it
into a cancer cell. “We are looking for the reasons—those
which may be shared by many women, or those specific to
just one woman, by examining as many tumors as possible,”
he explains.
The initial studies and scientific infrastructure were made
possible by a one million dollar research grant to Drs.
Martignetti and Dottino from the Ovarian Cancer Research
Fund (OCRF) to establish the Ovarian Cancer Translational
Research Group. Additional generous philanthropic
contributions, most notably those of the Ruttenberg Family
and the family of Michael and Sally Gordon, have allowed Dr.
Martignetti’s group to perform complete sequence analysis
of tumors that women treated at Mount Sinai have given him
permission to test. Intent on finding markers for early
detection and prevention, the team is looking for different
kinds of signatures from within the tumor data. For example,
looking at commonalities and differences among tumors,
2 | THE NE WSLETTER |
and linking them to biographical information like age and
staging of tumors, they can identify molecules that tumors
secrete which could be detected by a blood test to possibly
signal the earliest stages of tumor formation or response to
different treatments. Already the team has identified its first
candidate blood test and is moving forward on validating these
findings in larger datasets. Some of the results will already be
presented at this year’s annual Society for Gynecologic
Oncology meeting. Given these research successes and the
critical philanthropic support, the research team has grown
and expanded its scope. They are now also investigating
potential therapeutic targets, and genetic markers associated
with disease recurrence and risk that are present even before a
tumor develops. They are even investigating new technologies
for tumor sequencing. “Ultimately, the goal is to provide the
genetic information which can change how we deal with
ovarian cancer. As physicians, we need to evolve 21st-century
medicine from being reactive to being predictive, preventative,
and personalized.”
For these studies, Drs. Dottino and Martignetti have also
developed a number of national and international
collaborations. These include groups at the Memorial Sloan
Kettering Cancer Center in New York City; MD Anderson
Cancer Center in Houston, Texas; British Columbia Cancer
Agency in Vancouver, Canada; and the Mario Negri Research
Institute in Milan, Italy. Mount Sinai Hospital affiliates
include Englewood Hospital, Englewood, NJ; Elmhurst
Hospital, Queens, NY; and White Plains Hospital, White
Plains, NY.
To date, more than 100 women have enrolled in the
ongoing study, which also includes collection of a blood
sample, ascites fluid (abnormal accumulation of serous fluid
in the abdomen), and cell lines established from their
Dr. Martignetti and his amazing team — F ro n t ro w : J o h n M arti g n e t ti, H ardik Sh a h,
R a vi S a c hi d a n a n d a m. S e c o n d ro w : O l g a C a m a c h o -Va n e g as, F ei H u a n g, M aria R a m ire z,
C a t alin a C a m a c h o -Va n e g as, R ui Z h a n g, N ola n Prie di g k eit, a n d E st e fa nia R o d ri g u e z.
T hird ro w : E m ir S e n t urk, R e b e c c a M osi g, A n alisa D i F e o, Sa m a nth a C o h e n, a n d D e e p
A g n a ni. N o t pic ture d: P e t er D o t tin o, Ru d y Se g n a, C ar m el C o h e n, Mollie L o bl, a n d Li Lin.
tumors. “The data we have
been collecting is incredibly
rich and providing us with an
unprecedented view into the identity of these tumor cells.
The challenge continues to take this information from the
laboratory bench to the bedside.”
An example of what Dr. Martignetti means is a research
finding that he and other Mount Sinai investigators made
when working on the KLF6 gene. KLF6 is a tumor suppressor
gene—that is, a gene that stops cancer from developing. A
variation in this gene drove cells to grow and metastasize, or
spread. Working with mice that had been implanted with
ovarian tumor cells, Dr. Martignetti’s group showed that
treatment with certain chemical compounds attacked this
genetic variation, and the survival rate tripled. This work was
recently published in the journal Cancer Research, and as a
chapter in a book, The Biology of the Kruppel-like Factors
(Springer). It is also discussed in an upcoming article in the
Mount Sinai Journal of Medicine, co-authored with Dr.
Analisa Difeo.
For this research to be truly successful, a broad-based
research team of clinicians, basic science researchers,
technologists, and bioinformatics specialists (experts in
computer analysis of medical data) needed to be assembled.
Because of the incredible amount of data and the novelty of
these findings, they will need to work closely together,
sharing their expertise. They are hoping to translate whatever
genetic markers they find into another genetic screening test
like the one now available for BRCA 1 and 2 mutations.
Dr. Martignetti is very enthusiastic about working with
ovarian cancer because so little is known, and especially
because he is working with Dr. Dottino,“who keeps us honed
in on our goals. We need the clinical component, so we don’t
stay isolated in our labs. Dr. Dottino understands the illness
through treatment and care of patients, in ways that the basic
scientists do not.”
Dr. Martignetti has a long list of publications, honors, and
awards. He received his MD-PhD degree at Mount Sinai,
completed his pediatrics internship and residency at Mount
Sinai, and then did a fellowship in the Department of
Human Genetics. He was the Co-Director of the Gaucher
Disease Comprehensive Treatment Center at Mount Sinai,
Assistant Director of the DNA Sequencing and Genotyping
Core since 2000, member of the American Society of Clinical
Investigators, and an Executive Member of the MSSM
Institute of Personalized Medicine since 2007. He has faculty
appointments in the Departments of Genetics and Genomic
Sciences, Pediatrics, and Oncological Sciences. He attended
Columbia College (BA, Biochemistry) and Cambridge
University (MPhil, Molecular Biology).
Dr. Martignetti lives in Westchester with his wife, Dr.
Ilene Rabinowitz, who is a child psychiatrist, and three
children: a 15-year-old daughter, Chiara, and 11-year-old
twins, Sophia and Gianmarco.
Chiara, along with students from the Bronx High School
of Science and Barnard College, joined MD-PhD students in
the lab this past summer to work on this project. The MDPhD students are continuing their work in the lab during the
academic year. Dr. Martignetti brings his enthusiasm and
love of learning to all these young people, hoping to interest
them in pursuing a future in the field of cancer research—in
particular, ovarian cancer.
Dr. Martignetti’s promising work brings us hope for the
future, for our families, and for all women.
—VIVIA N PORT
| THE NE WSLETTER | 3
a volunteer’s
EXPERIE N C E
BY N A NCY IRIZ ARRY
I
was diagnosed in May of 2006 with Ovarian Cancer, a
very big surprise to me, because no one in my family
ever had any kind of cancer. So we were all taken aback.
It started out with a pain on my left side. In May 2005, I
told my GYN doctor that I had stopped getting my period. I
was 42 years old. She said I could be pre-menopausal. She
ran a series of blood tests such as CA125, thyroid, and
hormonal tests for menopause. They came back negative. So
she said, “Don’t worry, I will continue to monitor you every
six months.”
In three months I called her again to say I still had not
gotten my period. She told me to come in again, she did the
CA125 again, and it was still negative. Six months later she
said that I should wait a couple of months because it could
be my nerves, stress at work. So, now I waited until it was
already nine months and called again. I went back to her
office and she still could not find anything.
A year to the day later, I could not take the pain that I had
on my left side, so I went to a health clinic that sent me to
the emergency room. That is when they found I had ovarian
cancer and a tumor on my aorta. They did not know what to
do. I was in the hospital for a week, and all that they were
doing for me was giving me painkillers.
The doctors there started asking me for the names of all
of my doctors. Then I was referred to Dr. Chuang, a
gynecologic oncologist at Mount Sinai Hospital, where I was
moved.
I have a rare type of ovarian cancer called granulosa cell
tumor. Only 1,500 women are diagnosed each year. Dr.
Chuang told me that I had a good prognosis but the tumor
might come back and need chemotherapy treatment in the
future. He also explained what needed to be done. He was
not able to perform surgery until a week later, when he could
arrange for a specialist who would be able to help with the
tumor on my aorta. Thanks to both doctors’ expertise, the
surgery was a success.
While I was in the hospital, Valerie and Arden came to
visit me and told me about Woman to Woman. When I came
home, Pamela called me and introduced herself as one of the
survivor volunteers. That’s when I started to get all my
questions answered. Pamela provided me with the comfort I
needed to realize that I could overcome this.
4 | THE NE WSLETTER |
Two weeks after I had surgery, I started my chemo
treatments. I decided to get my treatments on an outpatient
basis closer to home. My treatments were intense. I had to go
for a week of chemo from 9:00 am to 5:00 pm every day for
a week, and then off for two weeks. I had to do four
treatments so this really took a toll on me.
I have to thank my husband, son, sister, and family for all
their support. They were my rock to help me get through
this. I love them all dearly!
While I was going through my chemo treatment, I was
able to speak with Arden and I expressed the need to help
others as Valerie, Pamela, and Arden helped me. I thank
these three amazing women who helped me through my
recovery. Just like so many other people, the first thing I did
after my surgery was go on the Internet. This provided me
with a lot of very disturbing information. So having them
guide me was a blessing.
In 2007 I joined Woman to Woman as a survivor
volunteer. I’ve met so many wonderful families and patients
that have helped me while I helped them. It’s an experience
that I am happy to be part of and look forward to.
In September 2008, I started to get pains again on my left
side, just like I did back in May of 2006. I was examined by
my doctor who asked me to get a CT scan and a PET scan.
In the PET scan there was something on my urethra. So Dr.
Chuang asked me to get a biopsy, to make sure that
everything was okay. Well, the biopsy showed that the
ovarian cancer had returned.
I had surgery again on October 2, 2008. The good thing
was that I didn’t have to take chemo. I was given an oral
medicine that is given to breast cancer patients. My doctor
wanted me to try it to see if it would help keep the cancer
away. I took it for six months. As of November 9th, 2009, I
am cancer free.
Being a two-time survivor is hard. It’s difficult to meet
with new patients and tell them that I had cancer twice.
The patient is worried about getting over what she has now
and she doesn’t want to hear that it can come again. So I do
not mention it unless someone tells me it’s there a second
time too. ■
sur v i v o rs &
VOLUNTEERS
WOMAN TO WOMAN UPDATE
F R O M A R D E N M O U LT O N ,
P R O G R A M C O O R DIN AT O R
ARDEN MOULTON
T
For six years, Woman to Woman has provided emotional support and information to women
in treatment for gynecologic cancer and their families. Our mission is fulfilled every day by
the generous outreach of our 14 survivor volunteers, who meet with women at time of
diagnosis and follow them throughout treatment. The Woman to Woman volunteers meet
one-on-one with their peers—to listen, discuss concerns, and provide support. They provide
hope for a good outcome, and a special understanding that cannot be provided by someone
with no personal experience with gynecologic cancer. On behalf of all the volunteers, our
special thanks to all of you who have generously allowed us to share your journey.
he past year was another busy one for our
program. Volunteers provided mentoring support
to over 100 women and their families. While the
financial realities of the last year impacted some of
our educational goals (specifically, the planned website), we
continue to educate women in treatment, healthcare teams,
the community, and the public about gynecologic cancer
and its impact.
The volunteers repeated their presentation to medical
students, telling their stories and informing future doctors
about the physical and emotional impact of gynecologic
cancer. Pamela Herman, one of the volunteers, compiled a
comprehensive resource guide to give to women at time of
diagnosis. It includes information about finances, support,
books and magazines, nutrition, where to get a wig, food
assistance, and more. Program founder Valerie Goldfein
and I traveled to Savannah for the annual conference of the
Association of Oncology Social Workers to teach attendees
how to start a program similar to Woman to Woman in their
communities.
Also, the Woman to Woman Patient Fund has been
accessed by a number of women—helping to pay electric
bills, transportation fees, and other out-of-pocket expenses
associated with treatment for cancer.
Among our goals for 2010 is to initiate a series of
information groups for women in treatment. A number of
women have requested access to wellness information
including nutrition, sexuality, and managing side effects of
treatment.
Another goal for 2010 is to evaluate the effectiveness of
Woman to Woman. We are designing a research instrument
to assess the impact of the program on the quality of life of
the women we support. We will use the results to adjust
program offerings to best address the needs of women.
Please call us if you are interested in accessing Woman to
Woman program offerings. We are here to support you in
any way we can. ■
LIN DA N E W SO N — We mourn the death of
Linda Newson in F ebruary, 2 0 0 9. As one of
our Woman to Woman volunteers, Linda
brought her skill as a social worker and her
personal knowled ge as a survivor of ovarian
cancer to her remarkable work sup p orting
women in treatment. W hen she experienced
a recurrence of her disease, she volunteered
to meet with other women experiencing
recurrences—an act of incredible generosity
and bravery. We miss her kindness, her
intelligence, her sense of humor, and her
unique ability to quietly wait for the right
time to say the perfect thing.
| THE NE WSLETTER | 5
GIN A D E PALMA’S FUNDRAISER F OR
OVARIA N C A NCER RESEARCH
AT MOUNT SIN AI
Gina DePalma, ovarian cancer survivor AND
award- winning pastry chef at Babbo Restaurant
in the West Village, decided to organize a
fundraiser to benefit ovarian cancer research
at the Mount Sinai Medical Center through
the foundation she created, Cowgirl Cure
Foundation. The event was held at Co., the
artisanal pizzeria of her good friend, Jim Lahey
of Sullivan Street Bakery. We all feasted on
delicious pizza with unusual toppings and other
tidbits, while enjoying the wonderful
camaraderie of the guests and the ambience of
the modern, fun space.
There was an outpouring of support for Gina by
her friends, family, and colleagues in the world of
food. An online auction was a great success, with
such items as dinner for four at Babbo, pizzamaking lessons with Lahey, a private dessert party at
your home with Gina (who brings signed copies of
her book, Dolce Italiano), and a gift basket from her
cousin’s salumeria, Mike’s Deli, on famous Arthur
Avenue in the Bronx.
IN GINA’S OW N WORDS:
That evening was the result of an amazing amount
of effort from the people closest to me, and some
that I had never met before we started planning it.
It resulted in a gathering of friends and family
from every corner of my life. To have them all in
one room together, supporting me, was almost
Mario Batali and Gina D ePalma at Gina’s fundraiser
indescribable. I was unspeakably happy, and proud
of how we all pulled it together, as well as stunned
that something so wonderful came out of what was,
to date, the most horrible thing to happen to me. It
was also very inspiring, because obviously when
people put their minds to it, mountains are moved.
I’m positive we can harness the energy and
commitment and love that was contained under
that roof and use it to find nothing short of a cure
for ovarian cancer.
Jane Lury (left) and Joyce Manheimer, Woman to Woman
Volunteers, with Dr. Peter Dottino, their gynecologic oncologist
Gina D ePalma, Fre d erick Frie d man, MD,
and Jamal Rahaman, MD, Gina’s g ynecolo gic oncolo gist
6 | THE NE WSLETTER |
FA NTASTIC
FUNDRAISER IN
PHO ENIX, ARIZO N A
BY VALERIE GOLDFEIN
Last March, Sophie Boyer (my cousin) and Morgan
Shepard, two high school juniors at Phoenix Country
Day School in Arizona, decided to do a fundraiser for
Woman to Woman.
They worked totally on their own without the
support of their school or even their parents, who were
kept in the dark for the first six months of planning.
They made lists and plans, timelines and budgets,
figuring out what needed to be done and when.
Without experience, underwriters, or planners,
they did whatever they could to save money: printing
and assembling their own invitations, decorating with
candles instead of flowers, begging local restaurants
for donations of food, making their own ice cubes for
weeks, and transporting supplies by themselves.
They invited their families, teachers, and neighbors.
And without telling me the real reason for my trip,
they invited me.
As I approached the Shepards’ house, I was shocked
to see an enormous Woman to Woman poster lit up at
the front door!
Arden was an integral part of the planning process,
having sent Woman to Woman brochures and
literature to be distributed at the event.
The evening was so perfect! The surroundings were
breathtaking, the food was wonderful, and most
important of all was the warmth that pervaded the
entire event.
Magnificent fundraisers Morgan She pard (left)
and So phie B oyer ( F o otnote: an ad ditional $ 4,0 0 0 was
d onate d after this photo was taken!)
My cousin Sophie and her best friend Morgan
spoke so beautifully. They called me their hero and
said things about me that I can only aspire to.
Several faculty members from their school
approached me with details of their own survivor
stories as well as accolades for Sophie and Morgan.
There was a PowerPoint presentation showing
images of women both healthy and ill, and prose about
cancer and about hope.
At the end of the evening, the girls presented a
check to Woman to Woman for $16,000, which they
sent to Mount Sinai along with tokens of emotional
support: anonymous notes of encouragement to our
patients and an “Honor Board” comprised of the
names of their own loved ones—and those of their
friends—ailing, recovered, and deceased.
To be honored in this way by two such incredible,
empathetic young women, who gave so generously of
their time and spirit, made this one of the most special
events of my life and a memory I shall always treasure.
So phie B oyer and
Morgan She pard with
Valerie G oldfein,
F ound er of
Woman to Woman
| THE NE WSLETTER | 7
introducing
DAVID A. FISHMA N, MD
Dr. Fishman joined the Mount Sinai Division of Gynecologic Oncology
in 2009 as Professor of Obstetrics and Gynecology and Director of
Gynecologic Oncology Research. He is the Director and Principal
Investigator of the National Ovarian Cancer Early Detection Program
(NOCEDP), which he initiated with National Cancer Institute funding
in 1999. The program has evolved into an international collaborative
effort of over 200 physicians and scientists dedicated to the development
of effective means for the accurate detection of early-stage disease in
asymptomatic women (i.e., women who don’t have symptoms).
D
r. Fishman has brought this program to Mount Sinai,
where asymptomatic women at increased risk for
ovarian cancer can be monitored. Clinical services
include evaluations by board-certified specialists in
cancer genetics, gynecologic oncology, ultrasound, and
psychology. Dr. Fishman told me that Mount Sinai is the
only NOCEDP site where gynecologic oncologists are
working so closely with genetic counselors. Women who
participate in the program return every six months for
follow-up, but remain with their own gynecologists for
routine care.
Newly developed diagnostic technologies are utilized,
including contrast sonography, genomics and proteomics
(the study of how genes and proteins work within the host
environment). Proteomics attempts to identify high- and
low-abundance proteins, which may reflect organ-specific
disease. Attempts to use mass spectrometry to identify
biomarkers for cancer look promising. The contrast
sonogram can detect abnormal blood flow unique to earlystage cancer, and has significant potential to distinguish
benign from malignant ovarian lesions. All of these
advances bring us closer to prevention, early detection, and
a better understanding of the etiology of ovarian cancer
and metastatic disease. “The goal is to develop an affordable
screening test that can be used anywhere in the world,” said
Dr. Fishman.
Until that test is a reality, many women at higher risk for
ovarian cancer elect to have their ovaries removed. He has
found cancerous or precancerous cells on ovaries removed
from asymptomatic high-risk women. Moreover, none of
8 | THE NE WSLETTER |
these women have developed peritoneal cancer, which is
thought to remain somewhat of a continued risk. The
following are criteria for possible participation in the
program: a personal history of breast, colon or urinary
cancer; a mother, sister or daughter with ovarian cancer;
many family members with breast and/or ovarian cancer; a
personal history of a positive BRCA1 or BRCA2 genetic test
result; a close relative with a positive BRCA1 or BRCA2
genetic test result; and use of fertility drugs for more than
one year.
When I asked Dr. Fishman what motivated him to go
into research on ovarian cancer, he said, “As a resident in
1988, I watched too many women die. I said to myself, ‘I
think I can do something to help. The greatest mitzvah
would be to prevent high-risk women from getting ovarian
cancer.’”
Dr. Fishman joined Mount Sinai after four years as
Professor and Director of Gynecologic Oncology at New
York University. Before that he was Professor and ViceChair of Gynecologic Oncology Research at Northwestern
University for 10 years. He was an attending physician at
Yale-New Haven Hospital and an Instructor in Obstetrics
and Gynecology at Yale University, where he completed his
residency in Obstetrics and Gynecology and Gynecologic
Oncology fellowship from 1988-1994. He received his MD
at Texas Tech School of Medicine, Lubbock, TX; an MS in
Biochemistry at the University of Texas, Galveston, TX; and
his BA in English Literature and Biology at Washington
University in St. Louis, MO.
RESEARCH ON
HEALTHCARE
DISPARITIES IN THE
LATINO COMMUNITY
Dr. Fishman has authored over 230 papers, abstracts,
book chapters and several books on gynecologic
malignancies. His research has received awards from the
National Institutes of Health, National Cancer Institute,
Society of Gynecologic Oncologists, Gynecologic Cancer
Foundation, American Cancer Society, the Society for
Gynecologic Investigation, Berlex Foundation and multiple
philanthropic agencies. Dr. Fishman serves as an editor for
three journals and an ad hoc reviewer for many medical
and scientific journals. He is a member of national and
international cancer institute study sections.
His membership in many medical and honor societies
and patient advocacy groups includes the American
Gynecologic and Obstetrical Society, Society for
“As a resident I watched
too many women die. I said
to myself, ‘I think I can do
something...to prevent
high-risk women from
getting ovarian cancer.’ ”
Gynecological Investigation, Alpha Omega Alpha, the
Society of Gynecologic Oncologists, and the National
Ovarian Cancer Coalition. He frequently lectures
worldwide.
Dr. Fishman lives in New Canaan, CT with his wife and
four children.
Patients and their families are fortunate to have
Dr. Fishman’s expertise and devotion to the study of
ovarian cancer at Mount Sinai. Woman to Woman
welcomes Dr. Fishman.
—VIVIA N PORT
K a t arin a Sussn er, MP H, Ph D, a n
Instruct o r in t h e D e p art m e n t o f
O ncolo g ical Scie nces, is d oin g a
research stud y of healthcare disparities
in the Latino co m munity, fund e d by a
g ra n t fro m t h e A m erica n C a ncer
Society. O verall, Latinos and African
A m ericans are un d erre p rese nte d in
g enetic counseling for cancer risk. The
purp ose of Dr. Sussner’s stud y is to
examine factors relate d to the und erre presentation of Latinas in g enetic
co unselin g f o r b re ast a n d o varia n
cancer risk. This information will help
inform the d esign of future e ducational
in t er ve n tio ns t o incre ase g e n e tic
counseling in this group.
Eligible participants are Latina women
diagnose d with breast an d / or ovarian
cancer un d er 55 years of a g e an d / or
with a fa mily history of breast an d / or
ovarian cancer. Particip atio n involves
c o m p l e tin g a o n e - ti m e 3 0 - m in u t e
t e l e p h o n e sur v e y. F o ll o w in g t h e
t e l e p h o n e sur v e y, p ar tici p a n ts w ill
re ceive sp e cific re ferrals t o o b t ain
g e n e tic c o u nselin g f o r b re ast a n d
ovarian cancer risk, if d esire d.
Providers can refer patients, or patients
the mselves can call if intereste d in
b eco min g p art of the stu d y, w hich
should be of enormous service to the
Latino community by helping to create
sensitive, a p pro priate outreach. A nd
those who participate in the study will
gain a better understanding of genetic
counseling and testing for breast and /or
ovarian cancer risk.
If you would like to get more information
about the research study, call Katarina at
212-659-5525.
| THE NE WSLETTER | 9
collab orations
C OMMUNITY O UTRE ACH
BREAST AND CERVICAL
CANCER EDUCATION
Sponsored by the Department of
Oncological Sciences
Esperanza y Vida (Hope and Life) and The Witness Project
of Harlem are two outreach programs sponsored by the
Program for Cancer Prevention and Control in the
Department of Oncolocogical Sciences at Mount Sinai
School of Medicine. Esperanza y Vida is culturally tailored to
the Latino community, and the Witness Project of Harlem
to the needs of African American women. Both aim to teach
about prevention and early detection of breast and cervical
cancer by increasing awareness, knowledge, and access to
screening. Each program recognizes and respects the
cultural values and beliefs of the community it serves.
I interviewed Lina Jandorf, the Program Director of
Community Outreach, who explained both programs.
THE WITNESS PROJECT® OF HARLEM
In church, people witness to save souls.
At The Witness Project, they witness to save lives!
The Witness Project of Harlem programs are presented in
churches and community centers by Witness Role Models
(WRMs) and Lay Health Advisors (LHAs). WRMs are
African American women who are breast or cervical cancer
survivors. Their presence as survivors is seen as a blessing and
proof that cancer is not a death sentence.
Witnessing is done by one to three WRMs. The
educational sessions address the fears and beliefs many
women hold about cancer. Both WRMs and LHAs are
selected and trained by the Project Coordinator. Witness
Role Models develop their narratives—their stories—in
their own group training sessions. LHAs are not cancer
survivors themselves, but are women who want to work
with the project to organize and publicize programs.
During meetings, LHAs present breast and cervical cancer
facts, try to dispel myths, and give out information about
available cancer screening resources.
This is so important because African American women
are twice as likely as white women to develop cervical
cancer and nearly three times as likely to die from it. And
1 0 | THE NE WSLETTER |
despite a lower incidence rate of breast cancer, the five-year
survival rate for African American women with all stages of
breast cancer is notably lower than the rate for white
women. African American women’s cancers are frequently
diagnosed at later stages. Low-income communities with
limited literacy have not been adequately reached by cancer
control strategies. There are many reasons for this. There
are practical reasons, as well as fear, a sense of fatalism, and
misconceptions about screening. Cancer education needs
to be provided in a way that addresses the values and ideals
of African American communities, and that is what The
Witness Project is all about.
This program was started in rural areas of Arkansas in
1990, and The Witness Project of Harlem, begun in 2000,
one of 25 in the nation, is modeled after that program. Fear
and silence is broken at these educational meetings. The
Witness Project has won national and local awards and has
held its Annual Meeting for Education and Networking, the
AMEN Revival, since 1996. The meeting attracts African
American women who are breast or cervical cancer
survivors or who are at higher risk for developing these
diseases, as well as those considering starting a Witness
Project in their communities.
If you are interested in participating in this program as
a team member or wish to schedule a Witness Project of
Harlem presentation at your church or community site
(anywhere within the five boroughs), you may contact Terri
Deans-McFarlane at Mount Sinai at 212-659-5517. Terri
works closely with D.G. Wilson-Davis, a community
organizer from the Spirit of Hope at the YMCA, 180 West
135th Street.
ESPERANZA Y VIDA
Healthy Families Start with Healthy Women.
Esperanza y Vida is a family-oriented outreach program
that includes many husbands and fathers who participate in
the meetings. It is very important for Latino men to feel
comfortable with the programs their wives or daughters
attend, so they come to the meetings too.
In East Harlem (and elsewhere in NYC), there are many
new immigrants who had limited opportunities for health
education and/or healthcare where they grew up, so
Esperanza y Vida health educators emphasize and explain
the importance of regular Pap smears and mammography,
Staff of community outreach programs —
In back, left to right: Yulinda Lewis-Kelly, Lina Jand orf,
and Luisa F eliciano. Center: Elsa Iris Mend ez.
In front: Terri D eans-Mc Farlane and A nab ella Castillo.
and teach female anatomy, as well as how cervical cancer is
transmitted. Diabetes education and control is also part of
the educational program.
The Centers for Disease Control and Prevention (a
national agency) has data from 11 geographic areas
indicating that the rate of new cases of invasive cervical
cancer among Latinas is about twice as high as for nonHispanic white women. This is true even though there is an
overall decrease in the rate of new cases in the United States.
Breast cancer is the most commonly diagnosed cancer
among Latina women in the US. Latina women are more
likely to have large tumors or metastatic disease at the time
of diagnosis, although their incidence rate is lower than for
non-Latina white women. Latina women have significantly
lower mammography screening rates. [These facts were
taken from an article, “Cancer Screening Among Latinas,”
by Lina Jandorf, et al, in Progress in Community Health
Partnerships: Research, Education, and Action, Fall, 2008:
The Johns Hopkins University Press.]
Ms. Jandorf explained to me that one-third of all Puerto
Ricans live in the US and over 800,000 in New York City. So
outreach here can make a very significant difference for that
population. There is collaboration with Dominican and
Mexican community groups and leaders as well, to learn
about intercultural variability and make sure those families
are reached in an appropriate manner.
As part of Esperanza y Vida, navigational services are
provided to women who are non-adherent to age-specific
screening recommendations. Ms. Jandorf also told me that
75% of women who haven’t been doing screenings are able
to complete the exams, following the community education
programs and guidance into screening programs. There are
three or four educational programs conducted each month,
with approximately 12 people attending each meeting. The
health educators call women after the meetings if they
aren’t currently getting screened and encourage them to do
so. Many places for screenings are free and don’t ask about
documentation of immigration status, but there is a fear of
that, which has to be addressed.
There are three locations nationwide currently for
Esperanza y Vida: New York City, the Buffalo, NY area, and
Arkansas. All three areas have significant Latino
populations.
Project Coordinators of the East Harlem Esperanza y
Vida are Anabella Castillo and Iris Mendez, a survivor of
breast cancer herself. They call organizations, visit senior
centers and arrange meetings in churches. They have
established connections in the community that make
outreach successful.
As a survivor of ovarian cancer, I wondered whether the
program educated women about this cancer and its
symptoms, as well as that of uterine cancer. Ms. Jandorf
explained that there is a problem in obtaining diagnostic
services such as pelvic ultrasounds, exams, and blood tests
for uninsured women. Pap tests and mammograms are
more available. Still, she happily agreed to arrange
distribution of symptom checklists that we can provide.
The Woman to Woman volunteers have seen the
devastation caused by advanced cervical cancer, so we
applaud these outreach programs. We are lucky that there is
screening for breast and cervical cancer and that there are
programs like the Witness Project and Esperanza y Vida.
These wonderful programs are saving lives.
If you would like more information or would like to
have a program presented at your organization, please
contact Anabella Castillo, at 212- 659-5660.
—VIVIA N PORT
| THE NE WSLETTER | 11
The Mount Sinai Hospital
One Gustave L. Levy Place, Box #1252
New York, New York 10 029
know the sy m p to ms
ovarian cancer
1 Va g u e b u t p e rsist e n t a n d u n e x plain e d
g astroin t estin al c o m plain ts su c h as g as,
n a use a, a n d in di g estio n
2 P elvic a n d / o r a b d o m in al s w ellin g a n d / o r p ain;
blo a tin g a n d /o r f e elin g o f fulln ess, in cre ase d
a b d o m in al si z e
3 U n e x plain e d c h a n g es in b o w el h a bits
4 U n e x plain e d w ei g h t g ain o r loss
5 F re q u e n c y a n d / o r urg e n c y o f urin a tio n
6 N e w a n d u n e x plain e d a b n o r m al
p ost m e n o p a usal ble e din g
7 F a ti g u e
8 Backache
uterine cancer
9 N e w a n d u n e x plain e d a b n o r m al ble e din g
cervical cancer
10
A P a p t est is use d t o d e t e c t c e r vic al c a n c e r,
n o t o v aria n o r u t e rin e c a n c e r.
Every woman should
undergo an annual rectal
and vaginal pelvic
examination.
If a n irre g ula rit y o f t h e o v a r y is
d e t e c t e d , o r if so m e o f t h e v a g u e
sy m p t o m s a re e x p re ss e d , f urt h e r
t e stin g sh o ul d b e p e rf o r m e d . T his
m a y in clu d e a C A -12 5 b lo o d t e st
a n d a tra nsv a g in al s o n o g ra m .
A c c o rd in g t o a n a rticl e in t h e
Journal of the American Medical
Association,* st u d i e s in d ic a t e t h a t
ovarian cancer is not a silent
disease; most women had
symptoms in the year prior to
diagnosis. In fa c t, 8 9% o f w o m e n
w it h st a g e I / II d is e as e a n d 9 7% o f
w o m e n w it h a d v a n c e d d is e as e
re p o rt e d sy m p t o m s.
*G o ff B A , M a n d el LS, M ela n c o n C H, Mu n t z H G.
“ F re q u e n c y o f sy m p t o m s o f o v aria n c a n c e r in
w o m e n p rese n tin g t o p ri m ar y c are clinics.”
JAMA 2 0 0 4;2 91:27 0 5-2712