Composing Sexuality in the Midst of Adolescent Cancer

Abstract

I said nothing for a time, just ran my fingertips along the edge of the human-shaped emptiness that had been left inside me.-Murakami (2007, p. 132).

Exploring illness identity among children and youth living with cancer: A narrative review

“…For example, children and youth often experienced social isolation and difficulties with social reintegration 23–27 . Other studies highlighted disruptions to one's sexual identity due to cancer 25,28–30 . Some findings suggested that sexuality was subverted at the expense of cancer survivorship, 28 essentially “freezing” a child's development at the time of their cancer diagnosis, 25 which resulted in reduced sexual drive and sexual activity 25,28 .…”

“…Other studies highlighted disruptions to one's sexual identity due to cancer 25,28–30 . Some findings suggested that sexuality was subverted at the expense of cancer survivorship, 28 essentially “freezing” a child's development at the time of their cancer diagnosis, 25 which resulted in reduced sexual drive and sexual activity 25,28 . Soanes and Gibson found that a “fragility of self” arose due to cancer‐induced hair loss 30 .…”

Psychosexual Care of Adolescent and Young Adult (AYA) Cancer Survivors

“…Additionally, given the seriousness of cancer and its treatment, sexuality often tends to take a backseat to survival in conversations and focus with patients. Having relationships and developing a sense of belonging, however, are deep human needs, and sexuality is an important component of these needs [43]. Establishing a sexual identity is an essential part of the AYA experience, and if these issues are not addressed among the cancer survivor community, there is a risk for poor outcomes such as relationship and sexual problems later in life [44,45].…”

“…That said, although some survivors may delay some aspects of their psychosexual experiences, not all are distressed by this and so providers should understand survivors' perceptions rather than comparing to normative milestones alone [38]. Overall, there needs to be more space for survivorship stories to include sex, sexuality, and intimacy in clinical encounters with AYA; patient education materials; online/social media; support groups; and literature [43].…”

“…In the United States, AYA cancer survivors have been found to be in relationships and married to a similar proportion to age-matched controls [23], and in general, this population reports high satisfaction with relationships [17,46]. Although once in relationships, some AYA cancer survivors have reported having difficulty as to when and how to disclose their cancer history to romantic partners [23,43,47]. Additionally, in a Danish sample, it was reported that cancer negatively affected relationships with partners, desire to date, or even to pursue having a partner [48].…”