The thought of getting breast cancer can be a worrisome one, and it may be on the minds of young girls more than ever before, as knowledge about family and genetic risk has increased in the recent decade. The LEGACY Girls Study, a study taking place across five sites in North America, is the first to focus on preadolescent girls growing up in families with breast cancer risk. One of its many aims is to understand if they have poorer psychosocial adjustment and breast-cancer specific stress.
“We know that whether or not there is full disclosure about family breast cancer risk, that children pick up on things,” said Lisa Schwartz, PhD, a psychologist in the Division of Oncology at The Children’s Hospital of Pennsylvania and assistant professor at the Perelman School of Medicine at the University of Pennsylvania, who is a co-investigator for the LEGACY Girls Study. “We also know that it heightens anxiety of mothers, so we suspected that it could impact the family environment in some way, whether that be positive or negative.”
The study team, led by Angela Bradbury, MD, assistant professor in the Department of Medicine, Division of Hematology/Oncology, and the Department of Medical Ethics and Health Policy at the Perelman School of Medicine at the University of Pennsylvania, between August 2011 and July 2013 enrolled 1,040 girls at ages 6 to 13. They analyzed behavioral surveys submitted by about 800 mother-daughter pairs. Half of the participants had a first or second-degree relative with breast cancer or a known BRCA1/2 mutation in the family, and the other half did not.
It is estimated that 5 to 10 percent of breast cancer cases result directly from high risk genes like BRCA1/2. As more women get access to genetic testing, it is important for clinicians to be aware of how this information could possibly influence daughters’ risk-taking or health-promoting behaviors, Dr. Schwartz said.
The study results, which were published in Pediatrics, did not reveal any stark differences in the general emotional well-being between the two groups. Girls from families with a history of breast cancer or risk seem to cope as well psychosocially as girls without that known risk. However, girls ages 10 to 13 did report higher breast-cancer specific distress if they came from a family at risk for breast cancer, and 12 percent had a distress level that would be considered clinically significant.
“This shows that these girls are aware that they are at higher risk for breast cancer than their peers, but it is not impacting them in a global way or permeating their whole psychological functioning,” Dr. Schwartz said. “Also, maternal anxiety was related to child anxiety, which is a very common finding. We can help mothers and daughters communicate with one another about the risk in a healthy way. We don’t want daughters to have a heightened sense of risk. We want them to have an accurate sense of risk and know that they have control over managing that risk and over their health.”
To that end, the LEGACY investigators are working on an internet-based intervention to educate adolescent girls about breast cancer risk and to create a platform for mothers to talk with daughters and relay accurate information in a developmentally sensitive way. The next step for the researchers is to test the intervention in a randomized trial with the same cohort of LEGACY Girls Study participants.
One of the messages the intervention will convey to girls is that it is highly unlikely for breast cancer to occur in the teenage years. It also will inform girls about how healthy choices during adolescence can minimize risk of adult cancer. And it will provide tips on how to handle everyday stressors that can make coping with an ambiguous health situation that has unknown outcomes difficult.
These are the types of important conversations that Norma Roth, a breast cancer survivor, has had with her children to reassure them that recent breast cancer advances have made it more curable than ever before. Her daughter, Marlena, is involved with the LEGACY Girls Study.
“Way before the BRCA genes were discovered, the women in my family truly thought something in their DNA was killing them, and they felt helpless,” Norma said in an interview that appeared in the Research Institute’s 2014 Annual Report. “Today we have better mammograms, we have MRIs, and we have genetic testing. All of these tools are very empowering for my generation. I think the more you know, the better you can control things and change the history in your life. That’s why I really wanted Marlena to be part of the LEGACY study.”
Teaching young girls how to prevent breast-cancer specific distress will become especially important, Dr. Schwartz pointed out, if there comes a time when experts determine that it makes sense to test for the genes for breast cancer in adolescence. Currently, professional societies do not recommend that children, even those with a family history of BRCA1/2 mutation, undergo genetic testing because no strategies are in place for how to respond to positive findings. Surveillance and imaging usually begins at age 25 for women who have a family history that suggests the presence of a harmful mutation.
The LEGACY Girls Study team is finishing up final assessments of data that they have gathered during the study period and plan to look at any changes in girls’ psychosocial adjustment over time. The project has been funded by the National Cancer Institute, and the investigators have submitted additional research grants with hopes of continuing to follow this unique cohort into young adulthood.
Read more about the latest study results in this CBS News report.