For Ellyn Davidson, there was only one thing scarier than being diagnosed with breast cancer. It was the prospect that her 8-year-old daughter would one day receive the very same devastating news.
"At the time of my diagnosis, she definitely was one of my first thoughts, but it never occurred to me that I could be carrying the mutated BRCA gene," she recalls.
Yet, despite her fears, Davidson adamantly refuses to have her young daughter genetically tested for the gene mutation.
"I would never have her tested until she was at an age where she could do something about it," she says. "I would likely start thinking about it somewhere around 18 to 20 years old for her."
But for Scarlett, a North Carolina mother who asked that her real name not be used, waiting was never an option. Scarlett had her daughter tested when she was 4 years old.
"When my husband's mother tested positive, we had him tested because there are ramifications for men, as well," she says. "We had him tested about a year and a half ago. He came back positive, so I decided to have my daughter tested, and she and my husband are both BRCA1 positive."
While every woman is born with the BRCA1 and BRCA2 genes -- perhaps the two most notorious breast cancer genes known today -- women, like Davidson, are part of a minority population of women who carry a mutated form of the gene that they inherited from their mother or father. These women are at much higher risk for developing breast cancer.
So, if you were a woman with a strong family history of breast cancer, would you want your young daughter tested? It is a question facing many women, as genetic testing for hereditary breast cancer becomes increasingly popular.
One simple blood test which screens for the mutated BRCA genes, and women could know their possible future, or perhaps more importantly, their daughters'.
So, why are so many mothers across the country opting out of having their young daughters tested? For Davidson, 37, it's a matter of bad timing.
"At this point, I just don't see a reason to make a child worry about something like that," she says. "She has a 50 percent chance that she's carrying the gene, but we will test when she's the appropriate age."
When Is the Right Time to Screen?
Current guidelines from the National Comprehensive Cancer Network indicate the "appropriate age" to begin screening women at high risk for the development of breast cancer is 25, or at least five to 10 years before the earliest breast cancer in the family.
Each year, close to 200,000 American women are diagnosed with breast cancer. While only five to 10 percent of these women have the hereditary form of the disease, their odds of developing breast cancer by the age of 70 are about 85 percent, according to the National Cancer Institute.
Dr. Jeffrey Weitzel, director of the department of clinical cancer genetics at the City of Hope Cancer Center in Duarte, Calif., says that, although a negative test result could provide some relief for older children and teens, there is also a 50 percent chance that they could be identified as a carrier of the genes -- a weighty revelation for any girl or young woman.
"At a time when choosing a prom dress can be high drama, the intrusion of fear about mortality may defuse joy, at best, and possibly cause emotional harm," Weitzel says. "This could also alter a teen girl's perspective about body image and her emerging womanhood."
Dr. George Sledge Jr., a professor of oncology at Indiana University School of Medicine in Indianapolis, echoes Weitzel's sentiments.
"The psychological effects on a teenager of finding they might develop a life-altering disease, or predisposition for a disease, can be devastating," he says. "Teenagers, as any parent can tell you, are wired differently than adults, and are simply not sufficiently mature to handle it."
Although testing positive for the altered genes is daunting for even the most mature of women, discovering that you are carrying the mutated BRCA1 or BRCA2 gene at age 40 leaves you with a list of viable treatment options that just aren't available for young girls. While older women can undergo a lumpectomy or a bilateral mastectomy, the only thing a young girl can do is sit and wait.
"As I see it, the main reason to not go testing in minors relates to the lack of modifiable lifestyle changes that are known to work," says Dr. Lisa Carey, medical director of the University of North Carolina Breast Center, adding, "There's nothing for them to do about it."
Many other doctors share Carey's opinion, believing there is no benefit to testing minors for adult-onset diseases.
"We can't do anything of benefit for a 15-year-old, therapeutically," notes Sledge. "Ordering a test that doesn't allow you to do affect outcome, borders on the cruel and irresponsible."
Choosing to Know
With this in mind, many might conclude that ignorance truly is bliss when it comes to breast cancer tests on the young.
But Scarlett disagrees. She says she receives much criticism from people for having her daughter tested at such a young age, but feels that "sticking your head in the sand" is the sharper end of a double-edged sword.
"The bottom line is, knowledge is power, and if you have this information, you can do things throughout the years," she says. "It's absolutely heartbreaking. It's a burden in my heart that I have chosen to bear because someday, it will benefit her that I know about this."
For Davidson, however, not knowing is the only option at this point in her and her daughter's life.
"I could get her tested and find out she has the gene and then worry for six, seven, eight years, and then find out that medicine has advanced and I worried for nothing," she says.
For more information about hereditary breast cancer, visit the Facing Our Risk of Cancer Empowered (FORCE) Web site.