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L’ORÉAL PARIS 

SURVIVOR DAY 

OF BEAUTY 

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WOM TO 

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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 


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. 



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 


(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 


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.” 


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. 


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 


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 


“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

WOM N WOM N - Mount Sinai Hospital

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