People with a genetic mutation linked to cancer risk
Women under 45
Women over 45
When a woman is newly diagnosed with a BRCA mutation, she faces many risk management decisions. Although many of these decisions impact family planning, little guidance is available on how to communicate this information. This study examines female previvors’ advice on effective strategies for discussing family planning decisions. (03/28/18)
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Strategies for communication about family planning following a positive test for a BRCA mutation.
Balancing health care choices for reducing risk of cancer with plans for a future family is challenging. Figuring out how to discuss these issues with partners and family is another added layer and is the focus of this study. Previvors are individuals who have an increased risk for cancer due to an inherited mutation or other genetic risk factor, who have not developed cancer. The many risk management decisions they face can be overwhelming. Risk-reducing strategies can include removal of breast tissue, ovaries and fallopian tubes; these approaches may affect family planning, particularly for younger previvors. These decisions affect not only the woman at risk but also her entire family. Little research or guidance exists about discussing family planning decisions when a woman has a positive
BRCA test. The purpose of this study by Emily Raushcer, PhD, and Marleah Dean, PhD, was to identify strategies that previvors with a BRCA mutation use to convey family planning information while managing cancer risk.
Previvors’ advice for communication about family planning centered on three common themes. They suggest that other previvors:
As one participant noted, “Take your time…and follow your heart.”
This study reports useful strategies for talking about family planning decisions. Different strategies reflect a previvor’s family structure and dynamics. While not all approaches will work for everyone, the three common themes suggest that some approaches are broadly useful. Open and ongoing communication with partners and family members can increase support. Identifying credible sources of information and what information exists helps previvors communicate options to others. Acknowledging emotional responses helps previvors make decisions and feel more comfortable in those decisions. As one interviewee said: “I think you have to be loving and patient with yourself. I wanted to be okay and ready to talk about it right away, and I just wasn’t….just be really patient and loving with yourself, and know that in time it will get easier.”
Use of genetic testing to determine an individual’s risk of hereditary breast and ovarian cancer is increasing. Women with mutations in BRCA1 and BRCA2 have a significantly high risk of developing breast and ovarian cancer and these cancers tend to occur at younger ages than the general population. Because these mutations greatly increase a woman’s likelihood of developing one of these cancers, BRCA carriers need to decide whether to pursue prophylactic surgeries to reduce their risk.
Preventive strategies can include bilateral prophylactic mastectomy (removal of breast tissue) and/or prophylactic bilateral salpingo-oophorectomy (removal of the ovaries and fallopian tubes). These decisions impact family planning considerations. A woman’s decisions on family planning affect her spouse or partner, children, parents, and extended family. These family dynamics affect how women discuss genetic cancer risk, yet little guidance exists on how to communicate about family planning and what strategies to consider.
What strategies do women carrying a BRCA1/2 mutation use for communicating with her partner and extended family about family planning?
In this thorough, well-designed study, researchers interviewed 20 women with a BRCA mutation who had not completed their family planning decisions. Participating women were over 18 (the age of participants ranged from 24-48 with a median age of 35.5 years) and had a committed life partner with whom they had already had at least one conversation about family planning. Researchers recruited previvors at the 2015 FORCE conference and later interviewed them by phone.
Previvors conveyed three common themes in their advice for discussing family planning.
As one participant urged: “I would say that when they started making decisions, whatever they felt was right is what’s right. It’s not what somebody tells them. It’s not what’s on a piece of paper. It’s not a statistic. If they feel in their heart it’s the right thing to do, then that’s what it is. Unfortunately, with BRCA that’s all you have to go on, wherever your heart leads you.”
Researchers interviewed a small set of previvors who carry a BRCA mutation and interview data alone is not generalizable. The researchers note that participants chose to be interviewed. These participants may be more open with family members in decision-making than other previvors. On average, interviewees were well-educated and relatively affluent Caucasian women, which also limits the generalizability of the study.
Many additional genes have been associated with increased risk for breast or ovarian cancer. Although women with other mutations were not included in the study, they may face similar medical challenges. The authors misstate that preventive strategies are not needed for other hereditary cancers such as Lynch syndrome. Because ovarian and uterine cancer are associated with Lynch syndrome, family planning considerations also impact these families. Further, men may carry a BRCA or other mutation which puts them and their children at increased risk for cancer. Men with mutations and their partners may also face medical decisions associated with family planning and risk of passing a mutation on to children.
Previvors advise women who test positive for a BRCA mutation to: a) engage in two-way dialogue with partners, b) seek information from reliable sources, and c) acknowledge the emotions around the decision-making process. As one previvor stated: “….it’s not an emergency. It feels like an emergency when you’re diagnosed….take your time….then follow your heart.”
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