Sister Study: Help Find the Cause of Breast Cancer

By Hayat Mohamed, BlackVoices.com

According to the National Human Genome Research Institute, only 27% of women diagnosed with breast cancer found it to be hereditary. That means three in four people diagnosed with breast cancer have no family history of it. So if breast cancer is on the rise and there's no familial history, what's causing this disease?

The Sister Study Breast Cancer Research is trying to find the answer to that difficult question. The Sister Study is a national effort to learn how environment and genes affect the chances of getting breast cancer. The study looks at women whose sister is diagnosed with breast cancer but they themselves are not. For the past five years the study has been working to recruit 50,000 women.

Recently Black Voices spoke with Sister Study recruiter Carissa Dixon about the low participation rate of African American women in the trial. "We have almost 50,000 women enrolled but only about 4,700 are African-American," said Dixon. "The important thing to remember is that even though women have not been diagnosed with breast cancer we all have a vested interest in finding the cause of this disease because we need to do something to prevent it," she said.

Check out how you or someone you know can get involved with the Sister Study.

Breast Cancer Myths Exposed

MYTH: Cutting cancer or allowing air to contact it causes it to spread.

FACT: Surgery remains a highly effective way to remove breast cancer from the body. Many African American women are diagnosed with breast cancer after it has moved to other parts of the body (metastatic breast cancer). There is no cure for metastatic breast cancer. This makes it doubly important for every woman, including African-American women, to adhere to proven screening recommendations to help find breast cancer early if it occurs. Once breast cancer is detected, delaying or rejecting surgical treatment increases the risk of metastatic disease and even death.

MYTH: Wearing a bra or a bra with an underwire contributes to breast cancer.

FACT: Although there has been a great deal of discussion that wearing an underwire bra, or a bra in general, might increase risk for breast cancer, such a link is not supported by the scientific evidence. A 1991 case-control study found that pre-menopausal women who did not wear bras had a lower risk of breast cancer than women who did wear bras; however, the researchers concluded this link not linked to the bra itself. The women in the study who did not wear a bra were more likely to be lean and have smaller breasts. Weight increases risk of postmenopausal breast cancer, and breast size is currently under study as a potential risk factor for disease.

MYTH: Deodorant use causes breast cancer.

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FACT: There have only been a small number of studies looking at the link between deodorant use and breast cancer. Research in this area was driven by concerns that chemicals found in deodorants might enter the skin in the underarm and cause changes in the cells of the breast that could lead to cancer. However, the evidence to date does not support a link between the two. Although a link between deodorant and breast cancer appears unlikely, there are too few studies in this area to say for sure.

MYTH: Mammograms cause cancer.

FACT: A mammogram is an X-ray picture of the breast. The X-ray machine uses very little radiation to detect breast cancer. The amount of radiation that is used in mammography has been reduced greatly and is considered to be safe for women of the appropriate age. It is recommended that women begin annual screening mammography at age 40. Mammography is the best tool doctors have to find breast cancer early. When breast cancer is found early, the 5 year survival rate is over 98% The benefits of mammograms, according to modern medicine, greatly outweigh the risks.

MYTH: If I have cancer, there is nothing I can do about it.

FACT: If breast cancer is found, there are more effective breast cancer-specific therapies today than ever before. Scientists are learning more about the biology of breast cancer allowing them to tailor treatment to the specific diagnosis. This increases the effectiveness of treatment because it helps identify the treatments that are most likely to benefit each patient. Knowing about the genetics of breast cancer has also led scientists to create drugs that prolong life. Much can be done today if breast cancer is found.

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To learn more about the Sister Study or to enroll in the study visit www.sisterstudy.org or call 1-877-4SISTER (877-474-7837).

How did The Sister Study get started?

Well years ago there was a lot of information and interest available for women who wanted to find out more about breast cancer, particularly how the environment effects the chances of getting breast cancer and that's how the Sister Study came about. We received a lot of advocacy and support from the community when we wanted to find out what causes the disease.

How long have you been working to enroll women for the study?

We are in our fifth and final year in recruiting women for the study. We actually haven't yet started analyzing the data; we're still in the recruitment phase. We really need African American women to participate.

How many minorities are currently signed up for the Sister Study?

We have fewer than 5,000 African American women. We have almost 50,000 total but only about 4,700 that are African-American. It's very low which is unfortunate, especially since breast cancer is more aggressive in diagnosing and found at a younger age for African-American women.

Why do this study if such a small percentage of breast cancer is not caused by genetics?

Even though all of it is not genetic, we do know that a woman who has a sister that was diagnosed with breast cancer has twice the risk of developing the disease herself. That may not have anything to do with genetics but simply shared environmental factors. One of the things that the Sister Study is looking at is lifestyle; where women grew up, the things that they may have been exposed to when growing up like chemicals and environmental pollutants will be shared by both sisters. Hopefully that will show us what is common among the women we will study over the next 10 years.

What do women who get involved have to do to participate?

Participation includes two telephone interviews that ask questions about their lifestyle, family history, diet. There are also written questionnaires that ask similar questions. There's a home visit by a trained female examiner where a woman will give samples of urine, toe nails, and house dust. Body measurements will also be taken at that time and that's basically it. Once a year women will be contacted to check in and see how it's going and how they're doing. See if anything has changed about their lifestyle. We also like to know if women have been diagnosed with breast cancer because over the course of 10 years we know that some of the women who join the study will develop breast cancer while others won't. So the key will be to study what's different about these women.

What would you tell our viewers about getting involved in the Sister Study?

This is the largest study of its kind and who knows when another one of this size and magnitude will come about. We can't afford to wait another generation to figure this out. If we don't figure out what's causing breast cancer, we can't find the cure. We need to prevent this disease for our daughters, granddaughters and future generations. Since most of what we know about breast cancer research comes from studies on mainly white middle aged women it would be a shame to have a study that finds causes and those results don't apply to black women because we're so underrepresented.

To learn more about the Sister Study or to enroll in the study visit www.sisterstudy.org or call 1-877-4SISTER (877-474-7837).

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