Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Alisa Cowan
Presenters: Rebekah Hamilton, PhD, RN, Assistant Professor, Health Promotion and Development, University of Pittsburgh School of Nursing, and Karen Hurley, PhD, Clinical Psychologist, Clinical Genetics Service, Memorial Sloan-Kettering Cancer Center
Using examples and quotes from her research interviews, Dr. Hamilton presented common issues of high-risk women under age of 40.
Young previvors face unique relationship challenges. While there is a sense of obligation to be honest because the genetic issue affects the entire family, including future children, there is often a fear of damaging a growing relationship. Should previvors reveal their BRCA status? At what time during a relationship should they do so? Will partners abandon them once they know about their BRCA status? Dr. Hamilton noted that only one of 76 interviewees was abandoned by her partner once she made her BRCA status known.
Most 20- and 30-year-olds don’t think of their own mortality, yet many young women consider their BRCA status to be a death sentence, and they become preoccupied with a sense that life is fragile. Once the initial shock passes, mortality remains on the previvor’s mind. Feelings of isolation can develop when they are unable to share these issues with friends who are not at high risk.
Young women at high risk feel a sense of compressed time. Dr. Hamilton found that young women often make choices based on being high-risk, changing or accelerating their life plans. Their BRCA status exerts pressure to decide whether/when to have prophylactic surgeries, and to choose between a career and having children at a young age. One 24-year-old woman said, “My doctor recommended having an oophorectomy before age 35. I feel like I should start [having children soon]… but I don’t know if I am ready for that.”
Despite the fear of passing the genetic mutation to their children, none of the women interviewed indicated they would forego giving birth because of that fear. There is general optimism that science will provide more solutions by the time their children might have to worry about being high risk.
Dr. Hamilton summarized the high-risk previvor experience with quotes from participants:
“It isn’t cancer; it isn’t not cancer. It is something in between.”
“Having the mutation can be seen in a positive light. It doesn’t have to be the end of the world. Everyone faces circumstances in their lives; this is just another thing that will make us stronger and teach us to grow, if we let it.”
Dr. Hurley discussed how young high-risk women who are faced with the challenges of being previvors can remain emotionally healthy while learning about the world and responsibility. She finds that although most people cope well with their genetic test results, young women are particularly at risk for becoming distressed. Common warning signs—intrusive thoughts, nightmares, and physical symptoms such as stomachaches—may indicate that a previvor might need more help or support. She emphasized that women who show signs of distress or who have unresolved grief and bereavement issues should consider one-on-one therapy.
Being at high risk is a lifelong situation. Here are Dr. Hurley’s recommendations to maintain long-term emotional health:
A free webcast of this session is available on the Joining FORCEs Conference webcast page.
Alisa Cowan lives in Maine with her husband, their two children, and their horse. She is the northern New England Outreach Coordinator for FORCE.