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Winter 2007

This issue in pdf (best viewed at 75%)

Calling all Sisters! Stand Up and Make a Difference Now!

by Kathy Steligo

Sister Study“Why her and not me?”

“Will this disease affect me too?”

“What can I do?”

These are common questions for women with sisters who face breast cancer. If your sister has been diagnosed, you can participate in the nation’s largest research effort to find contributing causes of breast cancer.

The National Institute of Environmental Health Sciences (NIEHS) is conducting the Sister Study, an ambitious long-term effort to determine how genetic and environmental influences affect who gets breast cancer. Launched in October 2004, the study hopes to follow 50,000 women whose sisters had breast cancer. More than 28,000 participants have already been recruited, but the study must add another 22,000 participants in less than one year.

“Many women have heard about the Sister Study, but they haven’t signed up yet, and we really need them now,” said Dale Sandler, Ph.D., Chief of the Epidemiology Branch at NIEHS and Principal Investigator of the Sister Study. “Doctors know very little about how the environment may affect breast cancer; that is why the Sister Study is so important. We hope women will make that call today,” she added.

Available in English and Spanish, the Sister Study requires very little time from its volunteers. The 10-year observational study begins with participants answering questions about diet, jobs, hobbies, and things they’ve been exposed to throughout their lives to determine what may influence breast cancer risk. Later, at a convenient time and location for the participant, a female health technician collects small samples of blood, urine, toenail clippings, and house dust, which will give researchers a better picture of the woman’s environment and genetic makeup.

Because breast cancer affects women from every walk of life, the Sister Study is seeking women of all backgrounds, occupations, ages, and ethnic groups. “If you’re a woman of color whose sister had breast cancer, your participation in the Sister Study is especially important,” said Dr. Sandler. “We want to learn more about how to protect your daughters and your granddaughters from this devastating disease.”

You’re eligible to participate in the study if you meet the following criteria:

  • You have a blood-related sister (living
    or deceased) who has/had breast cancer.
  • You’re between the ages of 35–74.
  • You reside in the U.S. or Puerto Rico.
  • You have never been diagnosed with
    breast cancer.

Ada Pacheco, age 52, enrolled in the Sister Study in honor of her sister Carmen, a 14-year breast cancer survivor. “I need to know why my sister had breast cancer and not me,” said Ada, who is 11 months younger than her sister. “We were born in the same place, raised together, and ate the same food. Why my sister Carmencita and not me?”

If you’re eligible, stand up and make a difference. To volunteer or learn more about the Sister Study, visit www.sisterstudy.org or www.estudiodehermanas.org (Spanish), or call 877-4SISTER (877-474-7837). You can also watch the award-winning Sister Study video, Sister by Sister: Discovering the Causes of Breast Cancer on the website.

The Sister Study Kit

If you participate in the study, you’ll receive a Sister Study Kit containing information and questionnaires. You’ll be asked to do the following:

During the first few weeks immediately following enrollment:

  1. Provide a blood sample, which will
    be drawn by a specially-contracted
    female professional who will come to
    your home or workplace. During her
    visit, she will measure your height and
    weight, hip and waist circumference,
    and blood pressure.
  2. Provide a sample of your first urine
    of the day, toenail clippings and house
    dust (collection materials are included
    in the Kit).
  3. Complete four questionnaires
    (estimated to take about 90 minutes).
  4. Complete a detailed phone interview
    (two one-hour sessions).

Over the next 10 years:

  1. Notify the study of changes to your
    address, phone number or health status.
  2. Fill out a questionnaire or do a
    telephone interview every other year
    you are in the study.
  3. If diagnosed with breast cancer
    while you are in the study, provide
    permission to contact your doctor for
    information about your breast cancer,
    and to get additional biological samples.
    If you are diagnosed with some other
    type of cancer, or a disease such as
    osteoporosis, heart disease, diabetes, or
    autoimmune disease, we may also ask
    for permission to contact your doctor
    for additional information.

Visit the Sister Study website for more details.

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