Telling kids about breast cancer genetic testing
Angelina Jolie says after her preventive mastectomy, she can tell her children they don't need to fear losing her to breast cancer.
July 4th, 2013
11:19 AM ET

Telling kids about breast cancer genetic testing

When Angelina Jolie announced she had undergone a preventive double mastectomy, people asked why. The actress explained that she carried a mutation in a gene known as BRCA1 that increased her chances of developing breast and ovarian cancer.

Her operation opened the nation’s eyes to just how important it is to know about hereditary cancer. According to a new study, a majority of mothers who get genetic testing talk to their children about it, especially if these women get the good news that they don't have the gene mutations.

The research, conducted at Georgetown's Lombardi Comprehensive Cancer Center in Washington, found that most mothers who were considering genetic testing for the BRCA1 or BRCA2 gene mutations already were thinking of talking with their children, especially if they had a family history of breast and ovarian cancer. They also noted that moms who did not discuss their test results with their children were more likely to regret that decision later on.

The study, published online Wednesday in the journal Cancer Epidemiology, Biomarkers & Prevention, looked at 221 mothers of children ages 8 to 21 who were enrolled in a parent communication study at one of three major cancer centers: Georgetown Lombardi, Mount Sinai cancer center in New York and Dana-Farber Cancer Institute in Boston. The women completed questionnaires before they had their genetic testing and one month after receiving their results.

"We know from women we've counseled at Georgetown that one of their main considerations of genetic testing for cancer risk is what the results will mean for their children," says the study's lead author, Kenneth Tercyak, director of behavioral prevention research at Georgetown Lombardi.

Women tend to reach decisions about when and how to share the news of their genetic tests with their children right after they learn the results, he says.

According to the American Cancer Society, the most common hereditary cause of breast cancer is an inherited mutation in the BRCA1 and BRCA2 genes. The risk may be as high as 80% for members of some families with BRCA mutations. These cancers tend to occur in younger women and more often affect both breasts, compared with cancers in women who are not born with one of these gene mutations.

In an article written by Jolie for The New York Times, she talked about the importance of telling her children, without scaring them.

"My chances of developing breast cancer have dropped from 87% to under 5%," wrote Jolie. "I can tell my children that they don’t need to fear they will lose me to breast cancer. "

 "We found that more than half of mothers disclosed their genetic test results to their children, especially if the children were teenagers," Tercyak says. "Parents say sharing the information is often a relief and that it's part of their duty as parents to convey it."

By looking at the research data, the Lombardi team has developed guidelines to help parents talk with their children about hereditary cancer risk and prevention.

"It's written in lay language for patients - a step-by-step decision guide on how women, even men, can approach this subject with their children," says Tercyak. "We know these conversations are happening and people wonder how to go about it. It's a new area of parenting. It's a brave new topic and we want to help make it easier for parents and their kids."

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    The main cause of breast cancer, believe it or not, is wearing bras. Asian and African women never got breast cancer, regardless of their genetics, until they adopted this pernicious habit. Bras constrict the tissues, deprive the cells of oxygen and trap the toxic waste products of cellular metabolism. If Angelina Jolie, instead of promoting amputation as prevention, had declared her refusal to wear bras, she would have done a lot more good for women throughout the world.

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    You know, it's just as scary a thought being a guy afraid to pass breast cancer genes on to a daughter, even if I never get it. It isn't about the parent in my case, but whether I should be one. If this technology that the celebrity did prevents the gene from passing to offspring, it should be done BEFORE child bearing. In my case, I'm just a guy, my life ending with cancer of any kind (researchers indicate that the location is often secondary) doesn't matter as long as I can do work before that point. But for possible kids, this is where the concern, and operation costs, ought to be targeted.

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      I had breast cancer in 2001. Lumpectomy, radiation, all's well. At that time it wasn't commonly known that the BRCA gene mutations could be passed down the father's line. Now, I'm 70 and my 45-year-old daughter were diagnosed within 2 months of each other with Stage III breast cancer. Because of my prior history she was tested and it was found that she carries the BRCA2 gene mutation. I've been tested and I too carry it. We both face double mastectomies, as well removal of ovaries and uteruses. he is having chemo, hoping to shrink the tumor and I have had one breast removed...it was found to have spread to a lymph node so I am on chemo. After that course I'll be having the surgeries needed. The worst thing is that my daughter's 20-year-old, newly married, also carries the gene mutation. My older daughter, thank God, does not carry the mutation! My son refuses to be tested, however I'm going to have a talk with his wife; they have two boys and need to know. I have also contacted all my family in my dad's bloodline about the issue. I hope they will be tested. It affects men and women.

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