Adolescence and young adulthood represent critical developmental periods. A number of important transitions occur during this time, including physical sexual maturity and the development of sexual self-concept [4], the quest for identity [5], and the onset of intimate relationships [5–6]. For adolescents that are already naturally concerned with how they appear due to the onset of puberty and sexual maturity, a diagnosis of testicular cancer may only exacerbate such concerns. Thus, losing one’s hair or testicle or displaying a large surgical scar may be quite traumatic, particularly as it relates to romantic and sexual relationships. Adolescents may also feel that a diagnosis of testicular cancer has threatened the very identity they have struggled to achieve and many may feel that their identity is now “cancer patient” or “cancer survivor.” For young adults involved or thinking about becoming involved in intimate relationships, the effect of testicular cancer treatment on sexual function, fertility, and overall future health may represent significant barriers to successful romantic and sexual relationships. Thus, the impact of testicular cancer on the developmental tasks of adolescence and young adulthood is likely substantial and one that, heretofore, has yet to be examined at depth.

Limited data exist on the impact of testicular cancer on romantic and sexual relationships among AYA testicular cancer survivors. Among a small cohort consisting of AYA testicular cancer survivors, 18% reported being angered and/or saddened regarding changes in orgasm and the lack of normal ejaculation [7], although they also accepted sexual dysfunction as a necessary consequence of testicular cancer treatment and remained hopeful that the ejaculatory process would eventually return [8]. Such findings stand in contrast to other work which suggests that AYA testicular cancer survivors evidence few problems with impotence, loss of desire, sexual dissatisfaction, sexual frequency, and sexual communication [9]. Notably, no work to date has focused specifically on romantic relationships of AYA testicular cancer survivors.

Research on romantic relationships of older testicular cancer survivors suggests that both survivors and spouses often report new relationship issues following treatment of testicular cancer, including communication problems centered on fear of talking about the cancer, problems in understanding and expressing feelings with one’s partner, the possibility of recurrence, and implications for the future [10–11]. Perceived attractiveness plays a role, as survivors who feel less attractive since diagnosis report less satisfaction with their romantic relationship as compared to survivors who report equal or increased attractiveness since diagnosis [11]. Partner status (i.e., partnered versus unpartnered) at the time of diagnosis and treatment of testicular cancer also appears to be a key indicator of post-treatment well-being, with those unpartnered at the time of treatment demonstrating a number of negative outcomes, including low sexual satisfaction [12], as well as low satisfaction with social support and low self-esteem and mental health [13]. Survivors unpartnered at treatment also report concerns that being a testicular cancer survivor will pose problems in future relationships [14]. Such findings suggest that romantic competence (i.e., self-efficacy for romantic relationships) may mediate outcome variables and thus have important implications for multidimensional quality of life outcomes.

Studies of sexual relationships among older testicular cancer survivors suggest a moderate degree of survivor-reported sexual problems. Specifically, approximately 20% of survivors experience loss of sexual desire, 12% experience erectile dysfunction, 44% experience ejaculatory problems, and 19% experience sexual dissatisfaction [15]. Such levels of sexual dysfunction are important because of their association with negative sexual experiences, low physical and emotional satisfaction, and low general happiness [16–17]. Research comparing sexual relationships of older testicular cancer survivors with those of healthy controls suggests survivors report more modification of sexual life, due mainly to decreased sexual enjoyment and decreased sexual desire, compared to healthy controls [18–22]. Survivors also report more ejaculatory dysfunction and erectile dysfunction than controls: up to 40% report erectile dysfunction two or more years post-treatment [23]. Characteristics associated with sexual problems in survivors include increased age, lack of a partner, higher overall anxiety, lower testosterone, being treated with chemotherapy and/or retroperitoneal lymph node dissection (RPLND) in addition to radiation therapy, and longer time since treatment [11, 18, 21, 22, 24–25].

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 [4–6]. 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, 14]. 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 [10–11]. 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 [35–37] 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 [10–11] 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, 12–13], 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.