Study: Impact of familial breast cancer risk on young girls


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Young women and girls from high-risk breast cancer families

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Checked Breast cancer survivors

Checked People with a genetic mutation linked to cancer risk

Checked Previvors

Checked Women under 45

Checked Other mutations: Families with a strong family history of breast cancer or any of the genes linked to increased breast cancer risk


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Does growing up in a family that is at high risk for breast cancer affect young girls? Recent research found girls from families with BRCA mutations and/or a strong family history of cancer to be as well adjusted as peers of the same age. The one difference was that girls from families facing breast cancer risk had more stress related to breast cancer than their peers. While these findings are reassuring, parents know their children best, and they should ask for help if they believe their daughters are not coping well. (11/03/2015)

Contents

At a glance                  Questions for your doctor
Findings               In-depth                
What does this mean for me? Limitations                               
Guidelines Resources and references


STUDY AT A GLANCE

This study is about:

How young girls are impacted by growing up in families with a history of breast cancer and/or BRCA 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 BRCA 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. 

Study findings:  

  1. Young girls within families with a history of breast cancer or a BRCA mutation reported higher breast cancer-specific distress than young girls from families without a family history of breast cancer.
  2. 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.
  3. Girls from families with a history of breast cancer or BRCA mutation did not have worse general psychosocial adjustment than their peers. 

What does this mean for me?

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.

 

Expert Guidelines

The National Comprehensive Cancer Network (NCCN) establishes guidelines for people with an inherited mutation 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 morbidity 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.

Questions To Ask Your Health Care Provider

  • How do I tell my children that they may be at higher risk for breast cancer/may carry a BRCA mutation?
  • At what age should I tell my daughter that she may carry a BRCA mutation?
  • At what age should I tell my son that he may carry a BRCA 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 hereditary cancer families?

IN DEPTH REVIEW OF RESEARCH

Study background:

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 BRCA 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 BRCA 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 BRCA mutation. The comparison group did not have a family history of breast cancer or a BRCA mutation. 

Study findings: 

  1. The more relatives who had breast cancer, the higher young girls perceived their risk.
  2. Higher general anxiety in daughters was associated with higher anxiety in their mothers, in addition to poor family communication.
  3. Girls from a family with familial risk were more likely to report that they had increased risk for breast cancer.
  4. Girls in both groups (those with and without familial risk for breast cancer), were unsure of their exact risk.

Limitations:

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 BRCA families was small.

Conclusions:

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.  

Published 11/03/15

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