Study: Impact of familial breast cancer risk on young girls
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This study is about:
How young girls are impacted by growing up in families with a history of breast cancer and/or mutations.
Why is this study important?
As the use of genetic testing has become more available, people are more aware of their elevated cancer risk due to a or other gene mutation. Because parents who are mutation carriers have a 50% chance of passing their mutation and its high risk onto their children, it is important to study and understand how children in high-risk families respond, cope and perceive their own breast cancer risk.
- Young girls within families with a history of breast cancer or a mutation reported higher breast cancer-specific distress than young girls from families without a family history of breast cancer.
- A girl’s amount of distress was found to be directly affected by the amount of distress exhibited by her mother with breast cancer: as a mother’s breast cancer-specific distress increased, so did her daughter’s.
- Girls from families with a history of breast cancer or mutation did not have worse general psychosocial adjustment than their peers.
While young girls from familial breast cancer families do not have worse general psychosocial adjustments than their peers, they do experience more breast cancer-specific distress. Parents know their children best; they should openly dialogue with their daughters, and ask for help if they believe their daughters are not coping well.
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Bradbury AR, Patrick-Miller L, Schwartz L, et al. “Psychosocial Adjustment in School-age Girls with a Family History of Breast Cancer.” Pediatrics. Volume 136, number 5, November 2015.
American Academy of Pediatrics and the American College of Medical Genetics, "Ethical and Policy Issues in Genetic Testing and Screening of Children." Pediatrics. Volume 131, number 3, March 2013.
FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.
This article is relevant for:
Young women and girls from high-risk breast cancer families
This article is also relevant for:
people with a genetic mutation linked to cancer risk
people with breast cancer
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IN DEPTH REVIEW OF RESEARCH
While previous studies looked at children’s response to having parents with cancer, few have studied how being from a family with a genetic or familial risk for breast cancer impacts children. Although results from studies of children with parents who have cancer suggest that these children may be at risk for internalizing and externalizing problems and general distress, the studies were often small and did not include a comparison group. It is important to understand how children are coping because research has shown that psychosocial distress can be associated with greater risk behaviors, such as alcohol and tobacco use. In this study, Dr. Angela Bradbury and colleagues at the University of Pennsylvania and the Children’s Hospital of Philadelphia looked at signs of distress in girls who were from families at high risk for breast cancer.
Researchers of this study wanted to know:
Do young girls with a family history of breast cancer or mutation have worse psychosocial adjustment (internalizing and externalizing problems and breast cancer-specific stress), higher risk taking, and lower preventive health behaviors than young girls without a familial breast cancer risk?
What factors are associated with higher perceived risk of breast cancer?
Population(s) looked at in the study:
The study included 869 mother-daughter pairs (441 pairs were from families with a history of breast cancer, while 428 were not). Daughters ranged from ages 6 to 13. Participants were from 5 U.S. study sites in these states: New York City, Philadelphia, Salt Lake City, the San Francisco Bay Area, and Canada (Ontario). Among the 441 mothers in the group with family history of breast cancer:
- about 40% had a personal history of breast cancer.
- about 14% had mutations.
The researchers assessed information that was gathered from surveying the mothers in each pair. Girls who were age 10 and older also self-reported information, while girls who were under age 10 did not.
The criteria for participating mothers and daughters with familial breast cancer risk was defined as having more than 1 close first- or second-degree relative (parent, child, sibling, grandparent, aunt or uncle) with breast cancer or a mutation. The comparison group did not have a family history of breast cancer or a mutation.
- The more relatives who had breast cancer, the higher young girls perceived their risk.
- Higher general anxiety in daughters was associated with higher anxiety in their mothers, in addition to poor family communication.
- Girls from a family with familial risk were more likely to report that they had increased risk for breast cancer.
- Girls in both groups (those with and without familial risk for breast cancer), were unsure of their exact risk.
This study only looked at mother-daughter pairs: there was no data on daughters with a deceased mother. Nor did the study take into account the impact of fathers. The study population of families was small.
Being aware of how breast cancer impacts daughters in families with familial breast cancer risk is important. This study shows that daughters from these families are generally well adjusted, although they do have greater breast cancer-specific distress and anxiety, and perceive higher breast cancer risk. Being aware of this can help health care providers determine interventions to address concerns of both mother and daughter. Members of our advisory board also note that although the children in this study did not necessarily feel more distress than their peers, parents should remember that every daughter and every family is unique. Parents should be alert for any changes in a child's typical behavior, such as sleep changes, worry, and/or a drop in school grades. It is important for parents to monitor their daughters’ behavior, open dialogue with them, and get help if they believe their daughter is not coping well.
The National Comprehensive Cancer Network (NCCN) establishes guidelines for people with an associated with cancer. NCCN recommends against genetic testing in children younger than 18 years when results would not impact medical management.
The American Academy of Pediatrics and the American College of Medical Genetics and Genomics developed a policy statement which represents recommendations developed collaboratively with respect to genetic testing and screening in children. The policy recommends:
- Decisions about whether to offer genetic testing and screening should be driven by the best interest of the child.
- Genetic testing is best offered in the context of genetic counseling. Genetic counseling can be performed by clinical geneticists, genetic counselors, or any other health care provider with appropriate training and expertise.
Specifically with regards to predictive genetic testing (e.g. testing for genes associated with cancer risk) the panel recommends:
- Parents or guardians may authorize predictive genetic testing for asymptomatic children at risk of childhood-onset conditions. Ideally, the assent of the child should be obtained.
- Predictive genetic testing for adult-onset conditions generally should be deferred unless an intervention initiated in childhood may reduce or mortality. An exception might be made for families for whom diagnostic uncertainty poses a significant psychosocial burden, particularly when an adolescent and his or her parents concur in their interest in predictive testing.
- For ethical and legal reasons, health care providers should be cautious about providing predictive genetic testing to minors without the involvement of their parents or guardians, even if a minor is mature. Results of such tests may have significant medical, psychological, and social implications, not only for the minor but also for other family members.
- How do I tell my children that they may be at higher risk for breast cancer/may carry a mutation?
- At what age should I tell my daughter that she may carry a mutation?
- At what age should I tell my son that he may carry a mutation?
- What signs should I be aware of that indicate my children may not be coping well with information about breast cancer risk?
- My child is showing signs of stress since we discussed cancer risk—are their resources to help him/her?
- Can you refer me to a child psychologist who has experience working with families?
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
The following resources can help you locate a genetics expert near you or via telehealth.
Finding genetics experts
- The National Society of Genetic Counselor website has a search tool for finding a genetic counselor by specialty and location or via telehealth.
- InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
- Gene-Screen is a third party genetic counseling group that can help educate, support and order testing for patients and their families.
- JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
- Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
- The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
- The American College of Medical Genetics website has a tool to find genetics clinics by location and specialty.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
- The National Cancer Institute (NCI)-designated comprehensive cancer centers have genetic counselors who specialize in cancer.
- FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can help you find a genetics expert near you.
Who covered this study?
Are the kids all right? When breast cancer runs in the family This article rates 4.5 out of 5 stars
Family history of breast cancer worries preteen girls about their risk This article rates 3.5 out of 5 stars
Strong family breast cancer history does not hike anxiety in teens This article rates 3.5 out of 5 stars