When should you test for breast cancer?

Legos are a favorite pastime for Tracy Elliman's family. But Tracy thinks most about the building blocks of her family's genetic history. Tracy's mother fought breast cancer twice, and five years ago, Tracy tested positive for a genetic mutation that puts her and her children at risk.

"I'm pretty sure the first thing out of my mouth was, 'Okay, I want Teddi and Gerrit tested too,'" said Elliman.

Women who test positive for the BRCA 1 and 2 gene mutations have up to an 80-percent chance of developing breast cancer and up to a 45-percent chance of getting ovarian cancer.

Children of BRCA positive parents have a 50-percent chance of also testing positive.

But even with the statistical odds stacked against them, most medical experts say testing kids may do more harm than good.

"The testing, once it's done, doesn't go away. So you have to play it all out in your mind. If you test your child and they're positive, again, when would you tell them? What would you do? Would you treat them differently, and is it fair to treat them that way? It is not easy," said Dr. Susan Domchek, University of Pennsylvania Abramson Cancer Center.

"My mother died of breast cancer when I was 3 years old. Her mother died of ovarian cancer before I was born," said Cara Scharf, who has BRCA mutation.

Cara Scharf was 22 when she was tested and learned she had the BRCA gene mutation.

"I felt immediately like I had to get started on my life, like I had to decide what my ultimate career goal would be and decide when I was going to get married and when I was going to have kids," said Scharf.

One year later, Cara says knowing her status has given her time to research her options. Those include taking hormones or drugs and being vigilant about regular screenings.

Some patients opt for surgery to remove their ovaries and breasts, but doctors advise against any medical action at all before age 25.

That's one reason Tracy had a change of heart. Instead of testing her kids, she'll now wait until they can decide for themselves.

"There's nothing you can do at this point other than worry. You certainly aren't going to take a 3-year-old's breast tissue. You're not going to put her through biopsies," said Elliman.

"I think that clearly, as the science improves, if we find out that it's advantageous to test minors, we will all be open minded about that," said Dr. Domchek.

About 100,000 tests for the BRCA gene mutation were done in 2007, almost double the number from two years before. A recent survey of adult BRCA carriers and their children showed about 40-percent supported testing minors.

Web Extra Information: To Test Or Not To Test

THE GENETICS OF BREAST CANCER:

Roughly 200,000 women in the United States, or about one in eight, will discover they have breast cancer this year. Next to skin cancer, breast cancer is the most common type of cancer among women. The five-year survival rate for breast cancers detected early is greater than 96 percent. Faulty genes inherited from one or both parents are thought to cause approximately one in 20 cancers.

Women who have mutations of the Breast Cancer Type 1 and 2 (BRCA1 and BRCA2) genes are 50 to 80 percent more likely to develop breast cancer and have a greater risk of ovarian cancer. Men with an altered BRCA1 or BRCA2 gene are also at a greater risk of breast cancer and possibly prostate cancer.

TESTING DEBATE:

A blood test can reveal whether a person has the BRCA mutation and is recommended for women with a very strong family history of the disease. Some parents are also choosing to get their children tested for the gene to find out their chances of developing breast or ovarian cancer later in life. Many professional groups discourage such testing of minors when there is no medical benefit. Risk reductions involve prophylactic surgeries, increased observation and chemoprevention, but are usually not recommended until age 25.

Recent research shows the next generation of parents, however, may support testing children even when they can't do anything to reduce that risk until they're adults. In the study, 53 parents and their children were surveyed. All the parents had the BRCA mutation and all their children were younger than 25 at the time they received their test results. Most of the participants were mothers (89 percent). Forty-five percent were sons and 55 percent were daughters. Forty percent of all respondents supported genetic testing of minors. Half supported it in certain circumstances.

The majority of sons and daughters supported testing. "It signals that the next generation may be more comfortable with genetic testing," lead author Angela Bradbury, M.D., of Fox Chase Cancer Center, in Philadelphia, Pa., was quoted as saying. "This could be because their generation grew up with genetics, learning about it in school or from the news, unlike their parents. To them, genetic testing may not be exceptional."


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