BRCA Positive and the Hard Choices that Follow

Darlena Cunha is a 36-year-old freelance writer and journalism professor at the University of Florida. When Darlena was in her early 30s, her mother, in her 50s with no personal history of breast cancer but a significant family history of cancer, sought out genetic testing and learned that she carried a mutation in the BRCA1 gene. Darlena learned that she carried the same mutation and began the journey of appointments with multiple specialists, discovering that while all would present her with options, no one would actually tell her what she should do.

Story Reference Points:

BRCA1 mutations and Darlena’s family history of cancer @ 1:30

Darlena’s mother tests positive for a BRCA1 mutation @ 5:20

Darlena and her sister’s single site genetic testing @ 6:45

Darlena’s experience with genetic counseling @ 9:46

Darlena’s experience with enhanced breast screening @ 12:09

Preventative mastectomy, recovery, and dealing with it all in the workplace @ 14:20

Prophylactic BSO looming @ 20:47

Impact of BRCA1 mutation on family planning @ 23:00

Impact on Darlena’s daughters @ 24:35

Need for more personalized risk assessments and recommendations @ 28:20

Links and Resources

Reactions to Washington Post article@ 38:04

Barriers to genetic testing for other women, cost-effectiveness and insurance @ 41:00

Darlena on Twitter

Darlena on LinkedIn

Information on GINA (Genetic Information Non-Discrimination Act)

Related pieces by Darlena:

“I have the scary cancer mutation. When should I have my breasts removed?” Washington Post. March 18, 2018

“Breast Cancer and the Mom-God Fantasy”

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