Motherhood with HBOC in Israel: experiencing preventive disruption.

backgroundThis study addresses a critical gap in current research by focusing primarily on women who were already mothers when given a diagnosis of Hereditary Breast and Ovarian Cancer Syndrome (HBOC), caused by pathogenic/likely pathogenic (P/LP) variants in BRCA1/2. While extensive literature exists on general experiences of HBOC and pre-parenthood decision-making, the unique challenges faced by mothers remain understudied, particularly within the cultural context of Israel, where family expansion is highly valued.

methodsSemi-structured interviews were conducted with 12 women diagnosed with HBOC (some with previous cancer diagnosis, others without), who became mothers before their diagnosis, and gave birth at least once post-diagnosis. Data was analyzed using thematic analysis to identify patterns and themes within participants’ experiences.

resultsThree themes were generated: (1) transgenerational transfer of cancer – breaking the chain; (2) transgenerational transfer of HBOC to the next generation – a complex decision; and (3) present and future challenges of motherhood with HBOC. Women chose preventive procedures to reduce cancer risk but often declined genetic testing in reproductive planning to avoid passing on the mutation. Disclosure patterns varied widely, as some learned of their HBOC status through multiple affected relatives, while others did so after a single diagnosis. Participants described what we conceptualize as “preventive disruption” – continually negotiating the tension between protective maternal instincts and genetic realities. Whether confronting immediate caregiving challenges or future-oriented anxieties, the emotional burden of genetic risk reshaped motherhood into an experience characterized by vigilance, difficult decision-making, and emotional complexity.

conclusionsGenetic counseling for mothers with HBOC who are considering more children should address PGT-M, medically advised breastfeeding cessation, and communication of genetic risk to children.