The purpose of this study was to explore AYA testicular cancer survivors’ subjective understanding of the impact of cancer in adolescence and young adulthood, with a particular emphasis on romantic and sexual relationships. Our identification of four themes, (1) embarrassment leads to delays in care-seeking, (2) testicular cancer makes you feel different from others, (3) being different from others makes you damaged goods, and (4) cancer disclosure is difficult, along with our description of typical cognitions within each theme, extends and supports the current understanding of the impact of testicular cancer on romantic and sexual relationships in adolescence and young adulthood in three ways.
First, our findings highlight both the vulnerability of, and opportunities for additional research on, adolescents and young adults surviving testicular cancer. Although it is true that the four broad themes could cut across other cancers such as breast cancer or prostate cancer, there are specific aspects of our findings that are particularly important for testicular cancer. Adolescents and young adults are developmentally focused on establishing their identity, including their sexual identity, and either currently involved or thinking about becoming involved in intimate relationships [4
]. A diagnosis of testicular cancer during this developmental period is thus likely to threaten the successful attainment of important developmental tasks much more so than a diagnosis of other cancers later in life. As our findings provide the first known examination of the impact of testicular cancer on romantic and sexual relationships in adolescence and young adulthood, it is clear that additional research is needed in order to fully understand and learn from the experiences of AYA testicular cancer survivors.
Second, and consistent with existing literature on older testicular cancer survivors, significant differences in survivor adjustment were observed based on relationship status. That is, unpartnered AYA testicular cancer survivors described particularly salient experiences as it related to feeling different from others, feeling like damaged goods, and feeling that cancer disclosure was difficult, much more so than partnered survivors. These findings are consistent with other quantitative work which has found that unpartnered testicular cancer survivors report higher levels of cancer-related stress symptoms than partnered survivors, suggesting that unpartnered survivors have fewer coping resources [33
]. Similarly, some findings suggest that unpartnered survivors also report worse satisfaction with erection and orgasm and lower overall sexual satisfaction, as compared to partnered survivors, despite equal levels of sexual desire [34
]. Thus, being unpartnered at diagnosis appears to form a vulnerability that remains even when survivors develop a relationship following treatment completion. For instance, some survivors have noted that being a former testicular cancer patient caused difficulty throughout their marriage [12
]. Our results with an AYA sample further confirm the importance of relationship status to survivor outcomes and highlight unpartnered survivors as a subgroup particularly in need of intervention.
Third, we observed a significant impact of testicular cancer on AYA survivors’ perceptions of masculinity and self-image. Research in this area with AYA testicular cancer survivors is nonexistent, whereas research in this area with older testicular cancer survivors has been equivocal. Earlier investigations failed to find any significant body-image issues among older testicular cancer survivors, while more recent studies have found that such survivors do indeed have significant concerns with their bodies. Specifically, 15% to 35% of survivors report a decrease in overall attractiveness, with perceptions of attractiveness associated with relationship satisfaction [10
]. Body image is an important aspect of choice regarding a testicular prosthesis, with reasons for opting for prosthesis including fear of loss of masculinity, concern about self-image, a desire to look “normal,” and a desire to “feel whole again” [35
]. Interestingly, only one participant (4.8%) among our AYA sample chose a testicular prosthesis. This percentage stands in stark contrast to other research indicating that 17%–42% of older testicular cancer patients opt for prosthesis [35
] and thereby highlights the need for a more nuanced understanding of how AYA men cope with perceptions of masculinity and overall self-image associated with testicular cancer survival.
Our study, based on 21 interviews, is clearly subject to limitations related to our qualitative methods approach, including a small sample size that made it difficult to capture developmental differences, as well as the use of a single recruitment site. Despite these limitations, our results do provide guidance for larger quantitative studies, particularly on how we can begin to improve AYA testicular cancer survivors’ outcomes through targeted intervention efforts. For one, interventions should be couched within a developmental framework that recognizes the importance of romantic and sexual relationships, even in relatively young men. For example, an 18-year-old testicular cancer survivor may still be dependent on his parents, may not have a long-term romantic partner, and likely has given relatively little thought to having children. In contrast, a 32-year-old survivor is likely physically and financially independent from parents, is more likely in a long-term relationship, and more likely to have children. As young men likely differ in coping with testicular cancer based on where they stand on the AYA developmental continuum, interventions that are tailored toward the particular areas that are most salient to a given AYA testicular cancer survivor could be most beneficial.
Our data also suggests that the targets of intervention for AYA testicular cancer survivors may be most effective if they are based on relationship status. As research has documented significant communication problems [10
] as well as varying levels of sexual dysfunction among partnered testicular cancer survivors and their spouses [15
], partnered survivors may benefit most from couples-based interventions that target areas such as improved partner communication, conflict resolution, and sensate focus. With regard to the latter, sensate focus is an organized series of exercises that structure noncoital foreplay to provide couples with a way of being physically close and intimate without the anxiety that can be evoked by attempting sexual intercourse [38
]. Sensate focus has been previously adapted to assist persons with cancer and other medical problems [39
]. Existing research has also found that unpartnered testicular cancer survivors demonstrate compromised quality of life (QOL) outcomes [7
], suggesting that survivors may evidence poor self-efficacy for romantic relationships that may, in turn, mediate QOL outcome variables. Our current results also highlight survivors’ difficulty with cancer disclosure. Collectively, these results suggest that unpartnered survivors may benefit most from interventions targeting increased social skills and self-presentation skills, as well as ways to approach cancer disclosure. That is, unpartnered survivors would benefit from specific intervention techniques, including but not limited to, how to initiate and maintain conversations, how to make appropriate eye contact, how to present oneself in terms of body language, how to make a good first impression, how to tell someone about their testicular cancer history, how to address specific questions about one’s cancer history, and how to gauge success versus failure.
Finally, our data suggest that the timing of interventions should take into account important characteristics of the AYA testicular cancer survivor population. The impact of testicular cancer may remain salient to AYA survivors for the several decades of their survivorship, highlighting the importance of early psycho-educational intervention so as to effect positive change for a significant portion of survivors’ lives. Testicular cancer survivors early into survivorship are facing issues that differ significantly from those of survivors further along survivorship. For instance, a survivor 3 months post-treatment is still coping with treatment side effects such as fatigue, sexual dysfunction, and delayed sexual intimacy, while simultaneously adjusting to life as a cancer survivor. In contrast, a survivor 3 or more years post-treatment is coping with issues related to body image and infertility [21
). Clearly, psychoeducational interventions that are tailored based on survivors’ status along the survivorship continuum, and thereby address the most salient issues, would be highly effective, particularly in light of research documenting that a strict therapeutic counseling approach to early intervention with testicular cancer survivors may not be particularly beneficial [42