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When to Tell Daughters About a Genetic Breast Cancer Risk

Dr. Jill Stoller, a pediatrician in New Jersey who carries a BRCA mutation, decided to tell her daughter, Jenna, then an eighth grader, about the family risk while planning for surgery after a breast cancer diagnosis. “I felt I had to give her context for the major surgery I was having.” In the ensuing years they didn’t talk much about genetic status but a week before her 18th birthday, Jenna asked to be tested and learned that she also had the mutation.

“She told me that the stress of not knowing was worse than knowing,” Dr. Stoller said.

Some women feel that the burden of knowledge is too big for adolescents. In 2009, when Ann Little, a special-education teacher from Boxborough, Mass., learned that she carried the BRCA gene, she told her three older children but chose not to tell her youngest daughter, who was 13 at the time. “I hated the idea that just as she was starting to develop breasts, she would have to think about losing them,” Ms. Little said. “It would be a huge, dark cloud hanging over her. The worst part of the mutation,” she said, “is that you burden your kids with this.”

There can be a tremendous sense of guilt about the possibility of passing along a harmful gene. “It’s a primal instinct to protect your child. The randomness of inherited mutations can leave parents feeling very helpless,” said Dr. Hurley.

Dr. Stoller describes finding out that Jenna tested positive as one of the hardest days of her life. “I understood how my father felt when he found out that he had passed the gene on to me. He said, ‘This is not the legacy I wanted to leave my family.’”

Dr. Hurley reminds parents that what they pass on to their children is far greater than one gene alone. “You can show them how you cope when life gets hard and what you do in times of uncertainty,” Dr. Hurley said. “You have control about what kind of parent you want to be.”

How the risk is communicated also matters. “Daughters are more likely to be anxious if mothers are anxious,” Dr. Bradbury said. She suggested that adults get the support they need first by talking to genetic counselors or a therapist.

Experts recommend using your child’s age, personality and maturity as a guide. Be straightforward and honest but don’t use confusing euphemisms or dump everything on your child at once. Keep an open-door policy about questions, share your feelings and know that it’s O.K. to say, “I don’t know.”

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