Sisters of women with breast cancer joining study

By Charnicia E. Huggins

NEW YORK (Reuters Health) – Thousands of women across the
country are voluntarily joining the National Institutes of
Health’s (NIH) Sister Study, and they all have at least one
thing in common: a sister who has been diagnosed with breast
cancer.

None of the enrollees have been diagnosed with the
condition themselves, but all of them “have looked at breast
cancer in the face of their sister,” the study’s NIH project
officer, Dr. Paula Juras, told Reuters Health. These women have
experienced “a moment of feeling so helpless and wanting to do
something,” she added.

They “feel so empowered by participating,” Juras said, and
by “being able to make a contribution” to breast cancer
research.

The 10-year Sister Study, conducted by the NIH’s National
Institute of Environmental Health Sciences, will investigate
how the women’s genetics and environment affects their
susceptibility to breast cancer.

Enrollment began in October of 2004, during National Breast
Cancer Awareness month, and will continue through September
2007, to meet a target of 50,000 women. To date, more than
24,000 women between the ages of 35 and 74 have enrolled.

Thousands more are still expected to join and researchers
are particularly interested in recruiting women who are
traditionally under represented in medical research, such as
minorities, seniors, and women who work in blue-collar
industries, like manufacturing. To that end, the Sister Study
has partnered with a variety of local, regional and national
groups to help increase awareness about the study.

Seventy-three-year-old Lois Catrambone is also doing what
she can to help spread the word. Having lost a sister to breast
cancer in 2002, her interest was piqued when she heard about
the study on public radio. “I couldn’t do anything to help her
get well, but maybe this is something I could do now,” she told
Reuters Health.

Catrambone, who lives in the Chicago area, not only joined
the study, but is also urging others to join. “I didn’t expect
to get as involved in it as I am,” she said. Catrambone carries
brochures with her about the study, distributing them whenever
she can. She also sets up tables at local hospitals during
various events and has visited senior centers and church groups
to spread awareness and invite more seniors to participate.

“I wanted to take it one step further,” Catrambone said.
“Not to minimize in any way research for a cure, (but) this is
the only study that I know that focused on cause,” she said.

At the start of the study, women will be asked to
participate in extensive interviews and provide samples of
blood and urine. Afterwards, they are expected to do little
more than keep the researchers informed of their current
contact information and any changes in their health status and
complete additional questionnaires or interviews every other
year for the length of the study. All personal information will
be kept safe and confidential.

For the most part, the “heavy lifting is done at
enrollment,” said Juras, adding: “We tried very hard to make it
easy for women to participate.” The study does not require
participants to travel, take any medication or make any changes
to their diet.

For more information about the study, including how to
enroll, visit the Sister Study Web site at www.sisterstudy.org
or call 1-877-4SISTER (474-7837).