Are we Only Doing Good? Long-term Psychosocial Effects of Fertility Preservation (or Lack Thereof) on Survivors of Cancer During Adolescence and Young Adulthood.

Abstract

Purpose/background: Patients diagnosed with cancer at reproductive age can be offered fertility preservation, which includes options of freezing sperm (male patients), oocytes, embryos, or ovarian tissue (female patients). This is intended to provide survivors with a chance to have biological children later in life (e.g., through utilizing assisted reproductive technologies, ART). However, psychosocial effects of no or completed fertility preservation remain largely unknown.

Methods: A total of 48 survivors completed semi-structured interviews (Mage = 34 y). They had been diagnosed with cancer during adolescence and young adulthood (AYA; between age 12 and 39 y), were <1 to 18 years (M = 5 y) from diagnosis, and had completed active cancer treatment. Survivors were asked about perceived consequences of having or not having completed fertility preservation. Answers were qualitatively analyzed with template analysis.

Results: Almost half of the survivors had completed fertility preservation at diagnosis. During interviews, all survivors described an emotional impact of no or completed fertility preservation, which caused positive or negative feelings, or was described as minor/absent. These feelings can change over time, as they were determined by past, present, or possibly future events. Such events clustered into a disruption in family building, followed by a phase of exploration of reproductive health posttreatment. This phase included much uncertainty, which triggered the exploration of survivors' fertility status, reproduction/pregnancies, and options of ART. Hope for natural conception prevailed irrespective of completed fertility preservation and was still abstract for various survivors. Utilization of ART was scarce and physically and emotionally burdensome. Alternatives to biological parenthood were deemed unfeasible. Uncertainty and phases of exploration, together with learning more about their fertility status (e.g., uncovering infertility/having problems conceiving, unexpected pregnancies) changed survivors' outlook on life and affected their romantic relationships, partner communication, and dating profoundly.

Discussion: Uncertainty about fertility and reproductive options is universal, irrespective of whether survivors had completed fertility preservation or not. If completed, fertility preservation can provide survivors with positive feelings (e.g., hope/reassurance), but uncertainties and worries surrounding reproduction/ART can add substantial burden throughout survivorship. Survivors' perception of no/completed fertility preservation can change over time and largely depends on whether ART is needed and its outcome. Thus, fertility preservation cannot always buffer negative effects, and if survivors remain without (additional) children unintentionally, emotional burden and grief can be significant. Health care providers should address any concerns of AYA patients/survivors and counsel them realistically about family building options; and refer patients and survivors to mental health specialists, if needed.