Study: Impact of familial breast cancer risk on young girls

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Contents

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


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 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. 

Study findings:  

  1. 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.
  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 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.

Published 11/03/15

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References

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. 

Disclosure

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:

Previvors

People with a genetic mutation linked to cancer risk

Breast cancer survivors

Women under 45

Be part of XRAY:

Expert Guidelines 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 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.

Updated: 01/02/2022

Questions to Ask Questions to Ask Your Doctor

  • 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?

Peer Support Peer Support

FORCE offers many peer support programs for people with inherited mutations. 

Updated: 03/12/2022

Find Experts Find Experts

Health care providers who are specially trained in genetics can help you more clearly understand your risk for . The following resources can help you locate a genetics expert in your area.

  • The National Society of Genetic Counselor website offers a searchable directory for finding a genetic counselor by state and specialty. To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization." 
  • 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. 
  • 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. 
  • FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and cancer and help you find a genetics expert near you. 
  • FORCE Peer Navigator Program will match you with a volunteer who has undergone genetic counseling and can help you navigate resources to find a genetic counselor near you.
  • Ask your doctor for a referral to a genetics expert. 

Updated: 03/16/2022

Who covered this study?

CBS News

Are the kids all right? When breast cancer runs in the family This article rates 4.5 out of 5 stars

Examiner.com

Family history of breast cancer worries preteen girls about their risk This article rates 3.5 out of 5 stars

PsychCentral.com

Strong family breast cancer history does not hike anxiety in teens This article rates 3.5 out of 5 stars

How we rated the media

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 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. 

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 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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