Women need [and are now getting] more than
medical care to heal from breast cancer.
By Kathy
LaTour
Peggy Plaisted recalls the day she was diagnosed
with breast cancer in 2002 as one with lots of surprises
and lots of paper. She had been tracking a cyst
on her ovary and had planned surgery to remove her ovaries
when her doctor recommended she have her annual
mammogram, which was overdue. The doctor called her
later with the news that she had a noninvasive form of
breast cancer and they would remove her ovaries at the
same time as a lumpectomy to remove the tumor in her left breast.
“They were giving me brochure after brochure about all
the services offered for breast cancer. It was overwhelming,”
she recalls. All the information
left her head
spinning, Plaisted says.
“I called my oncologist and told him I couldn’t get out
of bed. He gave me the name of the coordinator for the
support group and a prescription for an antidepressant. I
called and it turned out they were meeting that night—and I was there.”
Plaisted, who was 47 when she was diagnosed, returned
to the group sessions twice a month for a year because it
helped her to talk about what she was going through. She
still attends, but now she takes newly diagnosed women
from her community, something she does to give back. She
also goes to check in with the women in the group who
have become her friends.
Twice she has attended an all-day breast cancer symposium at
Gilda’s Club North Texas, a free support community named for
comedian Gilda Radner that has numerous support groups, classes,
speakers and workshops on topics that include nutrition, pain,
yoga, meditation and journaling, among others.
Just two decades ago, Plaisted’s doctors probably would have told
her not to talk to other women because they might give her wrong
information. Or, as happened
to one woman, be
told by her surgeon to “stop
crying” because she wasn’t
going to die.
Today, thanks to insightful
medical professionals
and demanding breast
cancer patients, the need
to include emotional and
social issues in the resolution
of a breast cancer diagnosis
has been accepted.
Building a Case
Research studies in the
psychosocial aspects of
breast cancer, which only
began in earnest in the
mid-1980s, have shed light on a complicated area that encompasses
not only emotional and social issues, including family matters,
spirituality, employment and insurance, but also supportive care
issues, such as pain management, and a vast array of complementary
therapies, such as exercise and nutrition.
Today, support for women with breast cancer ranges from
cancer center programs that might be a support group to others where patients might find enough options to bring
them to the hospital every day doing art therapy, music
therapy, an exercise class, a nutrition class or meditation.
Nationwide community programs include Gilda’s Club
and The Wellness Community, among many others.
Research in psychosocial areas explore myriad variables,
including what constitutes a psychosocial issue, how to
determine who needs interventions, the best solutions
and when the solutions should be presented. The studies
also look at why some women still do not receive adequate
interventions despite their demonstrated benefit and
what types of intervention are most effective for specific
subgroups of patients.
Mary Jane Massie, MD, attending psychiatrist
at The Breast Center at Memorial Sloan-Kettering Cancer Center in New York City,
has been working in the area of psychosocial
support for women with breast cancer for
more than 30 years. She experienced the medical
community’s acceptance that treating a
woman for cancer should encompass the whole person,
including her mental health needs and the core issues that
can cause disruption.
Dr. Massie, who recalls a time when patients weren’t
even told they had cancer, says in addition to medical
professionals who recognized the need, it was the women
themselves who demanded information and participation
in what was happening to them.
“We never saw men back when I started,” she says.“Women brought their mother or friend or sister. The
first time I saw a husband, I ran out to the waiting area
to ask if he wanted to join us. He said no, and right then decided he needed to go put money in the
meter. He ran out of there. Now, there are
men and the whole family, and the men
want to know how it works.”
Understanding the Need
Today, many women meet with support
persons immediately after diagnosis and are
introduced to the range of options provided
by the facility. These interventions may be
as casual as handing the woman a brochure
or as formal as an interview to gather extensive
information on her emotional and
social environment.
“It’s assessing what is there for patients—family, religion, community and their cultural
and professional community,” Dr.
Massie says. “We need to identify those who
are most vulnerable and determine how this
person best receives help.”
A 2004 report from the Institute of
Medicine of the National Academies presented
an overview of psychosocial help for
women with breast cancer. One study in the
report identified women of younger age as
those most likely to experience distress as
well as those with a history of depression,
physical health issues or inadequate social
support.
Patricia Ganz, MD, director of UCLA’s
LIVESTRONG Cancer Survivorship
Center of Excellence and head of the
division of cancer prevention and control
research at Jonsson Comprehensive
Cancer Center in Los Angeles, says screening
of a patient’s emotional status should occur before treatment to understand
the patient’s needs. “Then special attention
needs to be paid at transition points:
starting treatment, ending treatment. If you haven’t
already assessed once, you won’t know where the patient
started,” says Dr. Ganz, who contributed to the IOM
report.
It’s a matter of paying attention to patients and their
needs because there are no universal reactions, says Dr.
Ganz, offering as an example the results of a recent study
in women at the end of treatment that didn’t show the
distress researchers anticipated. Instead, physical issues,
such as sleep disorders and pain, were of more concern.
Dr. Ganz’s patient assessment process begins by exploring
intrapersonal issues and the patient’s life history, such
as how she coped with difficulty in the past and how she
feels about body changes and, if appropriate, being disfigured.
Then there are the interpersonal issues of relationships
and work followed by discussion of physical issues
like chronic pain, fatigue and sexual dysfunction.
"We want to help them find a way to normalize symptoms and know that these
issues go along with a diagnosis. They may not have difficulties immediately, but when
we have introduced the idea that they may experience something later, they know
they have a place to go" —Patricia Gantz , MD
Once the patient’s history has been assessed, Dr. Ganz
helps the patient understand that there will be a variety of
issues associated with the cancer journey and offers tools
for coping. “We want to help them find a way to normalize
symptoms and know that these issues go along with a
diagnosis. They may not have difficulties immediately, but
when we have introduced the idea that they may experience
something later, they know they have a place to go.”
It’s a process, Dr. Ganz says. No one can
handle it all on the first visit. For example,
if a woman is going to be thrown into
menopause, she should know what symptoms to expect
and where to get help.
Dr. Ganz, like many medical professionals, takes advantage
of well-established programs already in place. And,
for women who can’t or won’t be involved with people,
she recommends online resources, which a 2005 study
conducted by the University of Missouri at Columbia
showed could provide numerous psychosocial benefits.
The study analyzed 33,000 postings to an online community
and showed benefits such as increased skill or ability
to cope with the disease, improved mood, decreased
psychological distress and strategies to manage stress.
The longer women belonged to the online community,
the more they reflected a positive well-being—and the
more they began to share information with the group.
Indeed, the study showed the longer women belonged
to the group, the more time they spent online offering
information to newly diagnosed women who joined the
community.
Although psychosocial support services have come a
long way, Dr. Ganz says they are still not on par with
medical services. The breast cancer journey is individualized,
and women must continue to demand support
and take control of how to get support—and what that
support should look like.
Article amended May 17, 2007.
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