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Young and High-Risk

Previvor Issues

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.

Relating to Others

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.

Out of Sync

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.

Abruptly Changing the Life Plan

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.

What It Means to Live with 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.

Achieving and Maintaining Emotional Health

Being at high risk is a lifelong situation. Here are Dr. Hurley’s recommendations to maintain long-term emotional health:

  • Take risk seriously enough to take action without becoming overwhelmed
  • Balance chronic and periodic stress. Keep surveillance appointments, for example, without
    spending the prior week without sleep.
  • Prepare emotionally to make difficult choices, even if you’re not ready to make those decisions right now.
  • Prepare to address future crises. Unfortunately, previvors may face crises throughout life: false positive screening, relatives who are BRCA positive, or health issues (either their own or of loved ones).

Dr. Hurley’s Emotional Health Tool Kit for young previvors:

  • Develop a support system. Have people who are attentive and who listen nonjudgmentally.
  • Learn to monitor your thoughts. Correct or substitute negative thoughts with positive thoughts.
  • Distinguish between what you can and cannot control. You can change your own thoughts, but you cannot change other people’s reactions.
  • Prioritize enjoyable activities. Balance doctor appointments, work, childcare, and caretaking of others. Plan for fun and recreation to prevent burnout and stress.
  • Be aware of your physical and emotional needs. Recognizing your own needs will help you take better care of yourself and articulate your needs to friends and family.
  • Set an “information thermostat.” Many people deal with threat by gathering as much information as possible. It’s important to know when to stop.
  • Allow time to make good decisions. Even under the most critical circumstances, most women can afford to take a day or more to decide what is best for them.

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.

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