The Transgenerational Transmission of Primary Trauma in Hereditary Breast and Ovarian Cancer

Laura Royse, LCSW

Editor’s Note:  October is Breast Cancer Awareness Month and we hope that you find this post helpful in your work with clients experiencing trauma related to a diagnosis.  The author responded to our call for guest blogging.  If you are interested in guest blogging, please email us.

According to the U.S. Preventive Services Task Force, 2.3 million adult women in the U.S. are at high risk for breast and ovarian cancer based on family history1.  Breast and ovarian cancer that runs in families with a mutation in their BRCA1 or BRCA2 gene is considered hereditary breast and ovarian cancer (HBOC).  Women with a BRCA mutation have a significantly higher risk of developing breast and ovarian cancer compared to the general population.  Men who carry a BRCA mutation have an increased risk of developing breast and prostate cancers2.  Both women and men have an elevated risk for pancreatic cancer and melanoma (BRCA2).  Women with BRCA mutations must decide, sometimes quickly depending upon age, whether to proceed with frequent pre-screenings or pursue a prophylactic mastectomy and/or oophorectomy in order to significantly reduce their risk of cancer.

Psychosocial Implications

The psychosocial impact of HBOC is vast.  Resilience to trauma depends heavily on the family’s history of loss, premorbid and comorbid functioning, and existing support systems.  Nevertheless, high functioning people may experience disturbances in mood and anxiety as they learn to integrate their genetic history, present, and future.

HBOC threads itself throughout generations of families. Many families affected by HBOC have one or more members who died from breast and/or ovarian cancer and leave a legacy of trauma for future generations.  For example, a young mother (20-40 years old) with a known BRCA mutation who develops cancer may transmit her anxiety about her own cancer to her children.  This woman may have to cope with issues such as intensive treatment, surgery, changes in body image, concern for a recurrence of cancer and new cancer diagnoses, and possibly mortality.  These issues may last for years and are particularly significant in families with young children.  If a child inherits the BRCA mutation, she must not only reconcile the secondary trauma passed on by her mother, but potential primary traumas of her own as she copes with complex decisions about how to manage her risk. This inherited anxiety may also play a role in her defense against seeking genetic testing.

Women with BRCA mutations may re-experience feelings associated with the loss of family members, such as mild to severe anxiety, depression, isolation, flashbacks, somatization, and/or hypervigilence.  These symptoms may occur at the time of testing positive for a mutation, during the time leading to a prophylactic surgery, upon learning and treatment of a cancer diagnosis, and when a new family member (especially a close relative) is diagnosed with cancer or tests positive for a mutation, all of which may be experienced as new traumas compounded by her family history.  In addition, young women with BRCA mutations often feel forced to make advanced decisions for her life stage, particularly regarding family planning.  Mastectomy and reconstruction may cause distortions in self-body image and negatively affect sexual relationships with new partners and spouses.  Parents with BRCA mutations may experience displaced guilt for passing the mutation to their children.  Likewise, family members who do not have the gene mutation often feel a sense of “survivor’s” guilt.  Therefore, discussing family history and potential risk with children may be anxiety-provoking, but not impossible with proper support and guidance.

Treatment Considerations

Clinical social workers in agency and private practice have a unique opportunity to support individuals and families coping HBOC.  When working with this population, clinicians must be mindful of countertransference.   Most people know someone or have a family member who has had cancer.  As such, many clinicians may find it difficult working with a patient who refuses to pursue genetic counseling or prophylactic surgery.  It is imperative to understand a patient’s latent defenses and support their decisions.

If a clinician is working with a patient who has a strong family history of breast and/or ovarian cancer, it may be appropriate to suggest a referral to genetic counseling.  A genetic counselor can help your patient assess her risk and determine whether genetic testing is appropriate.  In addition, clinical social workers may refer patients for complimentary support, e.g., hospital-based support groups and Facing Our Risk of Cancer Empowered.   It is very common for people with HBOC to need to connect with others who are also at high risk.  In some cases, a referral for psychopharmacology is warranted.  Lastly, clinicians who educate themselves on HBOC, including common terms, will be better positioned to facilitate meaningful exploration and empathy with these patients.

People with HBOC must know that they are not alone.  Guiding patients to information and additional support, while lending a safe place to work though this journey, may be the most valuable way for clinical social workers to empower this population.

References:

1   Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: recommendation statement. Ann Intern Med. Sep 6 2005;143(5):355-361.65

2   Cancer.net (2010, February).  Hereditary breast and ovarian cancer:  Overview.  Retrieved February 7, 2012, from http://www.cancer.net/patient/Cancer+Types/ Hereditary+Breast+and+Ovarian+Cancer

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Laura R. Royse, LCSW has been a clinical social worker providing outpatient psychotherapy for the past 7 years.  She is a clinical supervisor for Catholic Charities of Brooklyn and Queens and operates a private practice in Queens.  In addition, Laura has been an outreach coordinator for FORCE (Facing Our Risk of Cancer Empowered) in New York City since 2010, where she provides support and information for women and families affected by hereditary breast and ovarian cancer.

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This entry was posted in Disaster & Trauma, Mental Health and tagged , . Bookmark the permalink.

One Response to The Transgenerational Transmission of Primary Trauma in Hereditary Breast and Ovarian Cancer

  1. Lee Asbell says:

    Awesome post.

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