Between Being Cured and Being Healed: The Paradox of Childhood Cancer Survivorship

Abstract

In this article, we describe how young adults who are transitioning off treatment for childhood cancer and beginning early survivorship are living in what might be described as a paradox of reality. These survivors' dual reality is their experience of intense frustration with their current state of functioning, and an overwhelming relief that therapy is over and that they survived. They have feelings of fear, trepidation, and anxiety for what experiences lay ahead, but have hope for the future. Finally, they acknowledge the growth they achieved through the experience of cancer treatment, as well as the many missed opportunities to experience normalcy while undergoing therapy. Young adults who are in early cancer survivorship exist in a reality in which they are living disease free, but perceive themselves as having a long road to travel to be healed.

Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies

“…The majority of the studies included both males and females. [24][25][26][27][28][29][30][31][32][33][34] Three studies did not indicate the gender distribution, [35][36][37] and the remaining two studies reported the inclusion of either all females 38 or all males. 39 The age of participants included in the studies ranged from 13 to 38 years old at the time of interview.…”

“…Although YASCC greatly desire to become part of the mainstream or peer groups, 28,35 they reported difficulty in fitting in and consequently experienced feelings of loneliness and isolation. 35 Survivors noted how missing out on developmentally important milestones caused them to be either more 38 or less mature 33 than their peers, which for some consequently affected their ability to assimilate with peer groups. 38 YASCC also reported being stigmatized by their peers due to their physical impairments, 26 and some purposely avoided treatment to hide their disease.…”

“…35 Survivors noted how missing out on developmentally important milestones caused them to be either more 38 or less mature 33 than their peers, which for some consequently affected their ability to assimilate with peer groups. 38 YASCC also reported being stigmatized by their peers due to their physical impairments, 26 and some purposely avoided treatment to hide their disease. 26,37 Although fitting in was difficult for most survivors, Enskar and Bertero found that survivors reported some positive and stronger relationships with friends as a result of their cancer experience.…”

“…Methods to collect data primarily consisted of individual interviews and/or focus groups, although one study used Photovoice 33 and one study used a series of online sessions with the same group of participants. 38 The majority of the studies utilized Grounded Theory 40 for data analysis. 25,28,[31][32][33][36][37][38][39] HRQOL issues for YASCC Domains and sub-domains of HRQOL that we identified in the present review are presented in Table 2.…”

“…38 The majority of the studies utilized Grounded Theory 40 for data analysis. 25,28,[31][32][33][36][37][38][39] HRQOL issues for YASCC Domains and sub-domains of HRQOL that we identified in the present review are presented in Table 2. Consistent with the City of Hope framework [7][8][9] and the QOL-CS tool, 9 we found that physical, psychological, social, and spiritual issues are reported by YASCC.…”