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WINTER 2013
THE WOMAN TO WOMAN NEWSLETTER | THE MOUNT SINAI HOSPITAL GYNECOLOGIC CANCER SUPPORT PROGRAM
FROM THE EDITOR
“you are
not alone”
VALERIE GOLDFEIN
Founder
Program Coordinator
ARDEN MOULTON
Editor
VIVIAN PORT
PHOTOGRAPHY
ALAN MANHEIMER
EDITORIAL ASSISTANCE
KEN ATKATZ
WOMAN TO WOMAN
ADVISORY BOARD
CARMEL COHEN, MD
MARY COSGROVE, MD
PETER DOTTINO, MD
VALERIE GOLDFEIN
FAITH KATES KOGAN
CYNTHIA LEVY
SARA PASTERNAK, PHD
JENNIFER PECK
JAMAL RAHAMAN, MD
RUDY SEGNA, MD
VIRGINIA WALTHER, LCSW
ROBIN ZAREL, LCSW
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
“TO KNOW THE ROAD AHEAD,
ASK THOSE COMING BACK.”*
O
ur founder, Valerie Goldfein, received a
well-deserved honor on October 5th,
when NY1, New York City’s 24-hour
news channel, hailed her as “New
Yorker of the Week” for improving the lives of
others through Woman to Woman. Valerie was
interviewed about our program, her role
in its creation in 2003,
and the work it continues
to do, in a newscast
that reached millions of
people—a wonderful way
to raise awareness about
gynecologic cancer. We
are very proud of Valerie.
VIVIAN PORT
Included in this newsletter
are summaries of our new “Reunions,” a way to
stay connected, talk to other survivors, and
learn about relevant topics. If you missed either
of them, you can read about them here, and
hopefully come to the next one.
I am listing below some relevant and
informative websites of interest to our
community—organizations in areas of
research, advocacy, support, and education.
Our Woman to Woman Information and
Resource Guide has hundreds of names,
addresses, and websites that can be helpful.
Patients at Mount Sinai should have received
one in a welcome bag. If you don’t have one,
please call Arden Moulton at 212-241-3793 to
obtain your copy.
www.mountsinai.org/womantowoman – our website
www.ocrf.org – The Ovarian Cancer Research Fund (OCRF) raises money for laboratory and clinical
research. They sponsor Woman to Woman, including its newly launched national expansion, with
additional funding from QVC.
www.ovariancancer.org – Ovarian Cancer National Alliance (OCNA) is an umbrella educational and
advocacy organization with chapters in 50 states. There is an annual conference in July in Washington,
DC, including advocacy days on Capitol Hill.
www.foundationforwomenscancer.org – The Foundation for Women’s Cancer (formerly the Gynecologic
Cancer Foundation), founded by the Society of Gynecologic Oncology (SGO), is dedicated to funding
research and training, and ensuring education and public awareness of gynecologic cancer. It also
sponsors excellent survivors’ courses nationally.
www.facingourrisk.org – FORCE is a national organization devoted to families affected by hereditary
breast and ovarian cancer. They publish a newsletter.
www.sharsheret.org – Sharsheret serves the needs of Jewish women, particularly young women, facing
hereditary breast or ovarian cancer.
www.gog.org –The Gynecologic Oncology Group (GOG), supported by NIH and NCI, promotes
excellence in the quality of clinical and basic science research.
www.cancercare.org – Cancercare provides counseling, information, and referral for social, financial,
and other community services, including wig exchange, supplementary financial assistance, medical
information, and other resources. All services are free of charge.
www.cancer.org – American Cancer Society (ACS) provides a comprehensive list of resources, support,
online groups, etc. for women with gynecologic cancer. The 24-hour information number is 800-227-2345.
They sponsor Hope Lodge New York City, lodging at no cost for cancer patients during their treatments in
Manhattan. American Cancer Society maintains a wig bank for women without insurance coverage.
Our Woman to Woman Information and Resources Guide provides names of stores in New York City
for purchasing wigs.
*Chinese proverb
All materials © Mount Sinai Hospital 2013
| THE NEWSLETTER | 1
a volunteer’s
survivors &
EXPERIENCE
VOLUNTEERS
WOMAN TO WOMAN UPDATE
BY ROBIN FINDLING
FROM ARDEN MOULTON, PROGRAM COORDINATOR
I
am a 10-year survivor of ovarian cancer and became a
volunteer with Woman to Woman eight years ago
through the recommendation of a nurse at my doctor’s
office. I recall my interview with Arden Moulton, our
Program Coordinator. I felt excited to help other women,
but also wondered if I could live up to what seemed like an
enormous task. I knew very early into the volunteer
experience that my own fears about the potential outcome
of an ovarian cancer diagnosis would be heightened, and
that it would bring up my own raw emotions.
Yet this experience has
changed and enriched my life.
Mostly because of all the
wonderful people that have
come into my life and
captured my heart. One such
person was Joan Brown, a
founding volunteer with
Woman to Woman who
recently passed away. I spent
many Wednesdays during my first years of volunteering
with Joan, from whom I learned the power of listening, the
gift of laughter, and the impact of our program in patients’
lives. Joan guided me in a way that helped me find the
strength I never knew I had.
SURVIVOR VOLUNTEERS
TELL THEIR STORIES
Volunteers made their annual presentation
(March 8, 2012) to second-year medical students
in Dr. Tamara Kalir’s course “Sexual and
Reproductive Health and Disease.” Dr. Kalir says,
“Because ovarian cancer is such a difficult
clinical diagnosis, it is important to consider it in
a differential diagnosis. A delayed diagnosis may
negatively impact prognosis. This presentation
allows us to drive the intellectual points home
emotionally…patients’ stories are a contribution
to the emotional component of learning.”
Woman to Woman volunteers are honored to
participate in helping another class of medical
students to understand the crucial importance of
listening to patients and understanding their
point of view.
But I would be lying if I told you that to be a volunteer is
always easy. I, like many of our patients and their families,
am a daughter who witnessed her mother’s struggle with
ovarian cancer. In addition, I was a caregiver for my father
when he had cancer. I know the depth of emotions that
family members have for their loved ones, as well as that
overwhelming sense of helplessness. Volunteering with
Woman to Woman has not only given me more confidence
and strength, but has also given me a greater sense of
purpose.
Patients are grateful to our program and the volunteers for
being there during their cancer journey. Honestly, I am the
one who is grateful and humbled by their openness and
bravery. A cancer diagnosis is a very personal and
emotional time, not only for the patient, but for everyone
in the family. I thank them for sharing and trusting me
during this time, and teaching me never to give up hope. !
2 | THE NEWSLETTER |
(left to right) Pamela Herman Elliott,
Andrea Licari, Dr. Tamara Kalir, Marie Sanford,
and Jane Slater.
The 16 survivor volunteers who are the heart
and soul of the Woman to Woman program
have continued their generous mentoring to
ARDEN MOULTON women in treatment for gynecologic cancer.
Whatever the setting—at a woman’s bedside
following surgery, by her side during chemotherapy, or
guiding her through the often complicated world of
healthcare, the survivor volunteers provide emotional
support and information throughout the complicated
journey of treatment for gynecologic cancer. One of their
greatest gifts to women in treatment is the message of
hope. Regardless of diagnosis, there is always hope. Our
Woman to Woman volunteers are wonderful examples
of living well after diagnosis and treatment.
N
ew volunteer Louise Wang joined the Woman to
Woman team this summer. She was put to work
immediately with a woman who speaks only
Mandarin—advising her through the difficult
process of obtaining Medicaid as well as helping her
understand the implications of her upcoming complicated
surgery. We welcome Louise to our very special group of
survivors.
The exciting expansion of Woman to Woman to medical
centers nationwide continues through the sponsorship of the
Ovarian Cancer Research Fund. The next Woman to Woman
program has begun at NewYork-Presbyterian, with Ellen
Kapito, RN, as its coordinator. We are so grateful to OCRF for
their confidence in our program as well as their commitment
to providing mentoring to as many women as possible,
through support and firsthand knowledge from survivors of
gynecologic cancer.
We finished our comprehensive research project questioning
58 women who participated in Woman to Woman to
determine the efficacy of the program and to find ways of
improving it. We have submitted a paper reporting on the
research findings to a professional journal. The results are
very gratifying—most women found the program extremely
helpful in many ways.
The volunteers planned and organized two Woman to
Woman Reunions for survivors—information sessions for
women and families—both held at the 92nd Street Y. Based
on their knowledge of what issues are most important to
women in treatment for gynecologic cancer, the volunteers
invited speakers in the fields of movement, exercise, and
nutrition at the first Reunion in May, and on sexuality and
body image at the September Reunion. Both were well
attended and positively received. The Reunions gave women
an opportunity to meet other women in similar situations in
an unthreatening, nurturing setting with no medical
associations. We look forward to the next Reunion—send us
your suggestions for topics!
Our June benefit, “Cocktails and Classics,” honored Faith
Kates Kogan for her remarkable contributions to ovarian
cancer research and for her generous support of Woman to
Woman. We are so grateful to the many individuals,
foundations, and businesses that generously contributed to
this benefit, raising money for Woman to Woman and the
Ovarian Cancer Translational Research Fund at Mount Sinai.
From everyone at Woman to Woman, our heartfelt thanks to
our generous supporters—and to the women who welcome
us into their lives, our special thanks. !
In Memory of Joan Brown
Joan Brown, one of the founding members of
Woman to Woman, died in May of 2012.
Joan was one of those rare individuals who
make every encounter memorable. A typical
conversation included a laugh-out-loud story,
a book recommendation, a touching update on
her beloved family, a restaurant review, and a
sincere inquiry about your well being. Joan was
funny, smart, loyal, generous, and honest. She
was, without effort, the perfect mentor to
women. Woman to Woman has been diminished
by her loss, but we value our vivid memories of
her, and will never forget her treasured
friendship.
To learn more about Woman to Woman, visit us at www.mountsinai.org/womantowoman
or to donate to the program, philanthropy.mountsinai.org/womantowoman
| THE NEWSLETTER | 3
Cocktails
FAITH KATES KOGAN, HONOREE OF THE EVENING
Faith Kates Kogan, honored for her deep commitment
and untiring support of ovarian cancer research and the
development of Woman to Woman.
and
Classics
JUNE 5, 2012 AT THE COLONY
CLUB IN NEW YORK
A CELEBRATION TO SUPPORT THE
OVARIAN CANCER TRANSLATIONAL
RESEARCH FUND AND
WOMAN TO WOMAN
Valerie Goldfein, founder of Woman to Woman,
welcoming our guests and introducing
Faith Kates Kogan, our honoree.
On June 5, 2012 Woman to Woman and the Ovarian
Cancer Translational Research Group honored
Faith Kates Kogan at a benefit cocktail party at the
Colony Club in New York City. In her many years of
service as Chairman of the Board of the Ovarian
Cancer Research Fund, Faith made incalculable
contributions to ovarian cancer research. Dr. Peter
Dottino, in his speech introducing Faith to the
benefit guests, reported that she has raised over $15
million dollars for research over the last 15 years.
Faith is the CEO of NEXT Model Management, the
devoted wife of Jeffrey Kogan, and mother to three
adorable children, all of whom were present at the
party. The event raised $300,000 to support Woman
to Woman and the exciting research being done by
the Ovarian Cancer Research Group. We are
grateful to Faith for allowing us to honor her, and to
our guests and their family members, who so
generously support our efforts on behalf of women
in treatment for gynecologic cancer.
Arden Moulton (left) and Survivor Volunteers Jane Lury and
Marie Sanford.
4 | THE NEWSLETTER |
Faith and Jeffrey Kogan with their children.
John Martignetti, MD (left), and Peter Dottino, MD
(right), Directors of the Research Fund, with John
Martignetti’s wife, Ilene Rabinowitz, MD.
Ann Marie Beddoe, MD (left) and
Benefit guest Gloria Appel (right).
| THE NEWSLETTER | 5
reunions
FITNESS AND NUTRITION
May 5, 2012
Y
Y
Our first Reunion at the 92nd Street Y was a wonderful event
with 50 people attending. Robin Findling, our volunteer
coordinator for the Reunions, introduced the speakers. First
came a talk about the importance of healthy eating delivered
jointly by Kimberly Silver, a popular New York health coach,
and Natalia Gaviria, a chef with a passion for healthy eating.
Then, Petra Kolber—an award-winning fitness expert and
herself a cancer survivor—gave an inspiring presentation
about fitness, energy, and survivorship.
All three speakers talked about how to maintain and build
energy, so important to all of us, whether in treatment or posttreatment. Natalia and Kimberly addressed the nutritional
path, and Petra, fitness and exercise.
Kimberly and Natalia emphasized the power of nutritional
whole food, which can energize us by strengthening the
immune system, improving mood, and increasing energy. The
China Study, a plant-based diet, was praised as an ideal way to
maximize antioxidants. They were very detailed in discussing
vitamins, antioxidants and preparation possibilities. A
delicious smoothie of fruits and vegetables was served after a
demonstration of how to make one in a blender.
Petra Kolber —
Our Inspirational
Speaker and
Fitness Expert.
Arden Moulton,
Woman to
Woman Program
Coordinator, with
Kimberly Silver.
Y
SEXUALITY AFTER GYNECOLOGIC CANCER DIAGNOSIS
September 29, 2012
In an informal but informative presentation, Drs. Ditza Katz
and Ross Lynn Tabisel of the Women’s Therapy Center led a
relaxed and comfortable discussion about sexual intimacy
after diagnosis and treatment for gynecologic cancer. As a
critical first step to normalizing issues around sex, couples
need to open channels of communication.
At the time of diagnosis, cancer is the priority. Women lack an
interest in sex at this time, and fear of intimacy can create
avoidance. However, seeking professional help from specialists
like Drs. Katz and Tabisel can make all the difference at this
time of transition—especially if the intimate conversation is
difficult, or the physical pain and discomfort needs
professional attention. Pelvic floor exercises are the domain of
the physical therapists who specialize in urogynecology.
Doctors do not always address this issue or facilitate needed
communication between partners. Clinical sexologists such as
Drs. Katz and Tabisel know how to help women and couples
discuss and manage their fears about bodily changes.
They say the way to look at it is “as a blip in your life—you can
still have a life.” Women can continue to be healthy sexually,
and the best advice is to be creative—sex does not always have
to include vaginal intercourse.
Petra followed with a truly inspirational talk about
survivorship, telling us her own story of two cancer
diagnoses—melanoma 12 years ago, and Hodgkin’s
Lymphoma, 10 years ago. Her connection to our women was
Some specifics discussed: Vaginal dryness is normal and can be
improved by vaginal moisturizers such as Replens or
Astroglide—different from, but used in addition to lubricants
like KY Jelly. A vaginal dilator following radiation to stretch the
(From left to right) Dr. Ross Lynn Tabisel, LCSW,
PhD; Robin Findling, Volunteer Survivor and
Chair of the Reunion Committee; and Dr. Ditza
Katz, PT, PhD.
Y
wall of the vagina might be recommended. Hormone
replacement therapy for severe symptoms of premature
menopause can be discussed with the gynecologist.
Drs. Katz and Tabisel were thrilled with the many questions
women asked, and how receptive participants were to their
presentation. Woman to Woman very much appreciates their
willingness to donate their time and share their professional
expertise with us.
You can reach them at www.womentc.com
electric. She understood so well the effects of treatment, the
anxiety of diagnostic tests, and uncertainty about the future.
Her practical demonstrations included breathing exercises to
help with stress reduction, and some basic Tai Chi, which she
thinks is very relaxing and energizing. It’s hard to describe in
words the wonderful energy she created in the group.
Y
Many thanks to all three of our speakers. We are very grateful
and fortunate that these women offered their services to
Woman to Woman.
Joyce Manheimer, Survivor Volunteer, with Rhouma
Choudhury, ovarian cancer survivor, and her mother,
Sajeda Choudhury.
Their websites for further information are:
Petra Kolber – www.petrakolber.com
Natalia Gaviria – www.cook-life.com
Kimberly Silver – www.indulgeyourhealth.net
Kimberly Silver is a graduate of the Institute of Integrative Nutrition, where she studied holistic nutrition, health
coaching, and preventive health.
Natalia Gaviria is a native of Medellín, Colombia, where she developed her appreciation of locally grown natural
foods. She is a natural food chef and a graduate of the Natural Gourmet Institute for Health and Culinary Arts in
New York City.
Petra Kolber is a fitness expert well known for her creativity in choreographing dance and exercise. She teaches at
fitness conferences, where she has won Best Presenter Awards. Petra appears on television, has choreographed
over 30 DVDs, and is a frequent contributor to fitness magazines. She represents Reebok, California Walnuts, Yes!
Fitness Music, and she was named one of Three Women Who Wow by Levi’s Jeans.
6 | THE NEWSLETTER |
Y
(From right to left) Survivor Volunteers Joyce Manheimer,
Robin Findling, and Nancy Irizarry; and Nancy’s sister,
Brenda Ortiz.
Reunion guest Michelle Boyd (left) and
Arden Moulton, Woman to Woman Coordinator.
Ditza Katz, PT, PhD, is founder of Women's Therapy Center, which is a practice limited to urogynecologic treatment of
female sexual disorders. She holds an undergraduate degree in Physical Therapy, a Master's degree in Pastoral
Psychology & Counseling, a doctorate in Clinical Sexology, and clinical training in manual therapy and urogynecology. Dr.
Katz is the only physical therapist in the US who is a clinical sexologist.
Ross Lynn Tabisel, LCSW, PhD, is Co-Director of the Women's Therapy Center. She holds a Master's degree in Social
Work from Adelphi University, a Postgraduate Certificate in Psychotherapy and Psychoanalysis, a doctorate in
Clinical Sexology, and Certificate Training in the area of Sexual Abuse.
Both Drs. Tabisel and Katz are Diplomates with the American Board of Sexology and recipients of the Erwin J.
Haberle Award in Clinical Sexology (2002).
| THE NEWSLETTER | 7
The Mount Sinai Hospital
One Gustave L. Levy Place, Box #1252
New York, New York 10029
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
cervical cancer
10 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