WOM N WOM N - Mount Sinai Hospital

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