AYA Fertility: Concerns, Emotions and Strategies for coping

Researchers sought to better understand and share AYA cancer survivors’ perspectives regarding fertility in a study titled Fertility Issues in Adolescent and Young Adult Cancer Survivors because fertility information is one of the most cited unmet needs among AYA survivors and lack of information is linked to reduced mental health and quality of life.

Factors contributing to this problem include:

  • Urgency to begin treatment; no/little time to take fertility preservation measures
  • AYA limited knowledge about their reproductive health, the impact of treatment and/or fertility preservation options
  • Parental protective buffering
  • Clinician discomfort in having the conversation

mother and child

In-person interviews and focus groups took place with a total of 43 AYA survivors.  Participants were asked a range of topics related to AYA survivorship, including fertility.  Questions regarding fertility included, Have you thought about your desire or ability to start a family and have children?

Participant characteristics:

  • AYAs were diagnosed between the ages of 15 and 24
    • 58% were diagnosed as teenagers; 42% were 20-24 at diagnosis
  • Types of treatment varied
    • 79% received a multimodal treatment; 16% received surgery only; 5% received chemotherapy only
  • Time since completion of treatment also varied
    • 16% had completed treatment between 6 months and 2 years previously; 42% finished 2-5 years earlier; 21% were more than 5 years from treatment
  • 58% of the participants were female
  • Per self-report, 5 males had banked their sperm and no females underwent fertility preservation prior to starting treatment
  • 19 AYAs were not sure whether their fertility was impacted by their treatment
  • 10 AYAs reported being told by their doctor that their fertility had not been affected

The researchers noted, Time since treatment was associated with a greater likelihood of reporting minimal or no fertility concerns; however, among females, it was also associated with increased worry about dating and partner reactions.

Concerns regarding fertility included:

  • Dating/partner reactions
    • Regarding disclosure; Pressure to start a family sooner out of risk of a shortened reproductive timeframe
  • Health risks
    • Concerned risk to one’s self as well as their future child, including passing on genetic risks and/or how they would feel if they had to go through a similar experience that their parents had with them, if their child were to get a cancer diagnosis
  • What potential infertility would mean for their life narrative
    • Adjusting ideas about family planning to include adoption or dating men with children

The researchers noted, Several participants-females more so than males-indicated fertility-related distress despite explicit reassurance from physicians that treatment had not affected their fertility.

Emotions expressed by AYAs when discussing fertility included:

  • Distress
    • Which included feeling upset, nervous, overwhelmed, angry and different from their peers
  • Hopeful/wishful thinking
    • Such as hoping for a miracle after being told having a child was unlikely
  • Lack of concern/minimal distress
    • Only reported by 18% of participants

With minimal prompting, females discussed fertility more frequently and showed more distress than males, particularly when there was uncertainty.

Strategies to manage concerns included:

  • Acceptance/”making do”
    • Placing emphasis on being an uncle/aunt, getting a dog, thinking of adoption as a back-up plan
  • Desire to postpone concerns
    • Teenage participants noted they would be more interested in childbearing in the years to come, allowing them to put off current concerns
  • Reliance on assisted reproductive technology (ART)
    • Confidence was placed by participants in ART, though according to the researchers, None of the participants who referenced ART indicated an awareness of its actual success rates, lack of data in cancer survivors, or the practical aspects of pursuing such treatments.

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