Walking the tightrope: Fertility preservation among hereditary breast and ovarian Cancer syndrome Previvors

A previvor is defined as an individual who has an elevated predisposition to cancer without a diagnosis of cancer and was originally coined by Facing Our Risk of Cancer Empowered (FORCE) community member in 2000 on a message board [1]. Hereditary breast and ovarian cancer (HBOC) syndrome is characterized by multiple family members with breast and/or ovarian cancer, the coexistence of breast cancer and ovarian cancer in a single individual, and/or an earlier age of cancer diagnosis [3]. HBOC accounts for 5–10% of all breast and ovarian cancers [2]. The elevated risk of developing one or both cancers in HBOC is most frequently due to germline mutations in the BRCA1 or BRCA2 genes but may also be due to other more rare hereditary syndromes [4,5]. The care and treatment of women with HBOC is multifaceted and involves complicated risk-benefit analyses, conversations about optimal surveillance, preventative strategies, risk-reducing mastectomy and salpingo-oophorectomy, management of sexuality and menopause, and emotional support [6].

The current recommendations for management of patients with HBOC is to undergo risk-reducing surgeries that can impact fertility during childbearing years (ages 35–45) [7]. Because of this, fertility preservation is an area of great interest and clinical importance when caring for these patients. The Society of Gynecologic Oncology (SGO) and American Society for Reproductive Medicine (ASRM) recommend early referral of women with HBOC to reproductive endocrinologists for a fertility consultation [[8], [9], [10]]. Counseling women with HBOC on fertility-related issues is complex and necessitates a highly individualized approach to discussing topics including oocyte cryopreservation, embryo cryopreservation, in vitro fertilization (IVF), preimplantation genetic testing (PGT), and oocyte donation [11].

Despite the critical importance of fertility counseling and the possible subsequent clinical interventions for previvors, guidelines for fertility preservation in HBOC are limited [12,13]. There is widespread recognition that women with HBOC have unique concerns about their fertility and overall reproductive health [33,34]. To provide comprehensive care, these concerns warrant personalized consultation with reproductive endocrinologists, yet there is not any expert consensus on best approaches to advising and treating HBOC patients with fertility concerns [[14], [15], [16], [17]]. Moreover, patients diagnosed with HBOC should be referred to a reproductive endocrinologist for a fertility consultation earlier than the general population. The aim of this study therefore was to compare fertility practices among HBOC patients to controls patients undergoing fertility preservation for non-infertility indications to provide data for counseling patients with HBOC on fertility preservation.

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