When my friend and colleague was in treatment for a recurrence, the hardest part of treatment was dealing with her sixteen year old daughter’s angry outbursts. My friend carries the BRCA gene mutation. Her daughter’s anger is a by product of knowing that her mother is a carrier. As she put it, “I watch you go through treatment and feel as if I am watching my own coming attractions.”
Here is the results of a study that deals with what my friend’s daughter feels.
What Do Young Adult Daughters of BRCA Mutation Carriers Know About Hereditary Risk and How Much Do They Worry
Principal Investigator: Andrea Farkas Patenaude, PhD, Dana-Farber Cancer Institute
Women with BRCA1 or BRCA2 gene mutations have a 50 percent chance of passing the mutation and its associated high risks for breast and ovarian cancer along to their daughters. Mutations in either of these genes increase the risk of breast cancer by 85 percent (which often occurs at unusually young ages), and ovarian cancer risk by up to 60 percent. The ability of daughters of mothers who are BRCA1 or BRCA2 mutation carriers to make informed health decisions is dependent on them becoming knowledgeable about their risks, genetic testing and options for screening and risk-reducing surgery.
This study uncovers the genetic knowledge, attitudes, health behaviors and life plans of daughters, ages 18-24 years, of mothers who are BRCA mutation carriers. Data from the study define specific health educational, psychological, insurance and medical needs of this population.
Written questionnaires and telephone interviews revealed that the young women in this study lacked knowledge about hereditary breast or ovarian cancer genetics, such as BRCA, when compared with women who had undergone genetic counseling. Further, the young women exhibited a limited understanding of screening and risk-reduction options and of the recommended age for initiating screening. Worry about hereditary breast or ovarian cancer was high among daughters, with about a third scoring above cut-offs on the Impact of Event Scale, which measured their distress related to knowledge of hereditary cancer. In addition, 40 percent of the young women reported that they worried a great deal or to an extreme about hereditary cancer (BRCA).
“Young, high-risk women have little knowledge about the probabilities and options for managing the cancers for which their risks are remarkably increased. Further, many report intense anxiety related to their potential cancer development,” said Dr. Andrea Farkas Patenaude of the Dana Farber Cancer Institute. “This data supports the need and can provide the foundation for the development of targeted educational materials to reduce that anxiety and ultimately improve participation in effective screening and risk-reducing interventions that can improve survival and quality of life for these young women.”
