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Most Women Share Genetic Test Results With Kids Even Though Value Isn’t Clear

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Most inherited cases of breast cancer have been associated with two genes: BRCA1, which stands for BReast CAncer gene 1, and BRCA2, which stands for BReast CAncer gene 2. Women with an abnormal BRCA1 or BRCA2 gene have up to an 85% risk of developing breast cancer by age 70. Abnormal BRCA1 and BRCA2 genes are found in 5% to 10% of all breast cancer cases in the United States. The risk of ovarian cancer also is higher than average in women who have one of these abnormal genes.

A small study has found that women who were tested for an abnormal breast cancer gene usually shared the test results with their children (kids younger than 25), even though it's not clear that sharing the results with kids this young has value.

In the study, 253 high-risk women who had BRCA1/BRCA2 testing filled out a survey that asked if they told any of their children younger than 25 about their test results (positive or negative); nearly all (96%) the women did so at some point:

  • 84% shared the results within a month after the test.
  • 12% shared the results between 1 month and 6 years after the test.

Learning that you have an abnormal BRCA1 or BRCA2 gene can be stressful and scary for you. But it can also be very scary and stressful for your children.

Women older than 25 with an abnormal breast cancer gene have a number of options available to find any cancer that develops early and to reduce the risk of developing breast cancer, including:

  • a more aggressive screening plan, starting at an earlier age
  • hormonal therapy to block the effect of estrogen on breast tissue
  • removing the healthy breasts (prophylactic mastectomy)

Some women also may consider having their healthy ovaries removed because of the increase in ovarian cancer risk. Removing the ovaries also dramatically lowers estrogen levels, and lower estrogen levels can reduce the risk of hormone-receptor-positive breast cancer.

Still, aggressive breast cancer screening and other possible risk-reducing steps aren't recommended until a woman is older than 25. Current guidelines don't recommend breast cancer gene testing until age 25 because a positive result would only lead to stress and worry in the young woman and her parents.

If you learn that you have an abnormal BRCA1 or BRCA2 gene, one of your first thoughts may be to tell all your children right away, no matter their ages. This reaction is normal and completely justified. You want to take charge of the unknown and protect your loved ones.

Still, waiting until your children are adults to tell them about abnormal breast cancer genes and testing may be a better idea. If you do decide to share your genetic status with your children, you might want to ask your doctor or your genetic counselor to help you. These professionals can help you and your children make sense of the information, manage stress and fear, and use the information to ensure the healthiest future possible.

If you have a young daughter, helping her live a healthy lifestyle that can reduce her breast cancer risk makes a lot of sense -- whether or not either of you has an abnormal breast cancer gene. A healthy lifestyle includes:

  • maintaining a healthy weight
  • exercising regularly
  • avoiding alcohol
  • not smoking

If you're the parent of a teen or tween girl, make time to talk to your daughter about her breasts, normal breast development, and the facts about breast cancer risk in mothers and daughters. During your daughter's regular check-ups, you may want to ask her doctor about breast health and make sure your daughter is part of the conversation. This is especially important if you or someone your daughter knows has been diagnosed with breast cancer. If you've been diagnosed, it might help to have your doctor talk to your daughter about your diagnosis and what it means and doesn't mean for her. Talking to your daughter about breast health and diet and lifestyle choices she can make is the best way to keep your daughter's risk of breast cancer as low as it can be.

Breastcancer.org Chief Medical Officer Dr. Marisa Weiss and her daughter, Isabel, have written the book Taking Care of Your "Girls:" A Breast Health Guide for Girls, Teens, and In-Betweens. They talk candidly about breast development and breast health -- separating myths from facts and detailing steps everyone can take to improve breast health and reduce breast cancer risk over a lifetime.

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