In deciding when to undergo mastectomy or oophorectomy, women with BRCA gene mutations must weigh the importance of their fertility against their anticipated longevity.
Doctors should understand that motherhood is an important factor in health decisions for women with BRCA gene mutations and support their variety of perspectives on when to take preventive action, a study suggests.
When a woman learns she has this genetic mutation that greatly increases her risk of breast and ovarian cancers and decides to undergo preventive removal of the breasts and/or ovaries, it can deal “a fatal blow to maternal identity,” and patients need the latitude to deal with that in their own ways, according to the authors of the small study of Israeli women, Chaya Possick and Miri Kestler-Peleg.
This study was the first to examine the experience of motherhood among women who are BRCA mutation carriers and have undergone risk-reducing surgery. It was published in the journal Qualitative Health Research in December 2019.
While older women seem to take the situation more in stride, a central dilemma for younger women with BRCA mutations is considering whether to have their ovaries and fallopian tubes removed through a surgery called salpingo-oophorectomy, thereby reducing their cancer risk but shortening their childbearing years, or alternatively putting off the surgery so they can continue to have children, even as their cancer risk increases, the authors found. It’s a complex decision, they said, that calls upon women to simultaneously consider the past, present and future.
In addition to recognizing that their BRCA story began with prior generations due to the inherited nature of the gene mutation, these women are aware of their own concerns in the moment while experiencing “their future death or children’s grief, and their children’s future problems in dealing with BRCA,” the authors found. “Their fear of their children suffering makes all the timelines coalesce.”
Expert guidelines state that the ideal time for women with BRCA1 mutations to have salpingo-oophorectomy is between the ages of 35 and 40 or after childbearing is completed. Waiting until age 40-45 is reasonable for women with BRCA2 mutations who have already undergone a mastectomy, the guidelines say. There is no recommended age to undergo mastectomy for women with BRCA mutations, but they are encouraged to discuss the option with their doctors.
In the study, the researchers gathered data by conducting interviews with 16 BRCA-positive mothers ages 36 to 57, 14 of them married and two divorced. Of that group, 11 women had undergone both oophorectomy and mastectomy, while four underwent oophorectomy and one had a mastectomy. For all participants, at least six months had passed since the most recent preventive surgery. The women were recruited from a hospital breast clinic and the Israeli BRCA nonprofit organization BRACHA.
Because the study was conducted in Israel, the country’s higher rate of BRCA gene mutations (those of Ashkenazi Jewish descent face an increased risk), a national imperative to multiply, high expectations of mothers and a view of motherhood being a crucial part of womanhood factored into the findings.
These ideas were reflected in the way the women made their decisions about surgery: by considering it in relationship to motherhood. When it came to mastectomy, for example, some timed the operation so it wouldn’t interfere with their children’s lives, while others had the surgery sooner in the hopes that they would be more likely to live longer to be with their children.
“Women fear that their children might become orphans or that they will have to live with the anxiety that their mother might die,” the authors wrote.
Women in the study generally thought it best to conclude their childbearing before getting tested for a BRCA mutation. Nevertheless, after oophorectomy, some found themselves perpetually longing for the child who would never be born, even if they previously had decided they did not want to expand their families, the authors reported.
Having the mutation also affected the way the women counseled their children about life decisions. In an effort to gain some control over the condition they knew they might pass along, some mothers thought ahead about what their children should do if they inherited the mutation. For example, one suggested that her daughter marry young, have children and only then get tested for the mutation, the authors reported.
The researchers recommended that further study of the relationship between time, motherhood and BRCA gene mutations be conducted.