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To examine adolescent and young adult (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.
Twenty-one AYA testicular cancer survivors, aged 18 to 34 years, were recruited from outpatient testicular cancer follow-up clinics and completed a semi-structured qualitative interview that assessed the impact of testicular cancer on their romantic and sexual relationships.
Four themes were identified that reflected survivors’ understanding of the impact of cancer in adolescence and young adulthood: (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.
As these themes represent important components of being in a romantic/sexual relationship, either currently or in the future, AYA testicular cancer survivors would benefit from the development of tailored interventions focused on improving these relevant domains.
Testicular cancer is the most common and most curable form of cancer in adolescent and young adult (AYA) men ages 15 to 34 years, with 5-year survival rates as high as 95% [1–3]. Such high survival rates indicate that these young men live a significant portion of their lives as testicular cancer survivors and, thus, remain at-risk for a host of challenges associated with their testicular cancer history. As the AYA years represent a time of intense physical, cognitive, social, and emotional transition, the challenges that arise are unique from those faced by other age groups surviving cancer, and these challenges threaten multidimensional quality of life outcomes throughout the relatively long period of survivorship. The purpose of this qualitative 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. A better understanding of the issues relevant to testicular cancer survivorship among AYA will help in identifying unmet needs and informing targets for future intervention.
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 , the quest for identity , 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 , although they also accepted sexual dysfunction as a necessary consequence of testicular cancer treatment and remained hopeful that the ejaculatory process would eventually return . 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 . 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 . 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 , as well as low satisfaction with social support and low self-esteem and mental health . Survivors unpartnered at treatment also report concerns that being a testicular cancer survivor will pose problems in future relationships . 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 . 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 . 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].
Despite the amount of research focused on romantic and sexual relationships following testicular cancer, it is notable that such research has focused almost exclusively on older survivors and seemingly neglected AYA testicular cancer survivors whom the disease most often affects. AYA are developmentally in the midst of forming close romantic and sexual relationships and may be especially vulnerable to the impact of testicular cancer diagnosis and treatment. Testicular cancer also involves a male organ that is highly associated with masculinity, attractiveness, sexual function, fertility, and romantic relationships – all critical aspects of AYA development. As little is known about this topic, and adolescence/young adulthood is a period of great change, we chose an inductive, qualitative method to examine AYA testicular cancer survivors. Qualitative methodologies allow researchers to capture the perspectives of the participants and thus highlight important areas of inquiry previously unconsidered.
We recruited 21 AYA testicular cancer survivors aged 18 to 34 years during routine outpatient follow-up visits to testicular cancer clinics at Indiana University Simon Cancer Center from May 2009 to December 2009. Study recruitment continued until theoretical saturation was reached ; thus, no a priori number of participants was specifically targeted. We utilized a purposive sampling technique whereby a clinic nurse identified AYA testicular cancer survivors with a range of ages and relationship experiences and who met the following eligibility criteria: (a) completed treatment for testicular cancer within the past 3 to 36 months; (b) 18–34 years of age; and (c) English-speaking. At the visit, the nurse provided eligible participants with a brief study description and assessed their interest in participation. Individuals who expressed interest were then approached by the first author in their private room and provided with additional study information. Written informed consent and authorization for review of medical records release was obtained, with interviews taking place immediately thereafter. All participants were compensated with $30 gift cards. The research was approved by the Institutional Review Board of IUPUI.
Guided by Ferrell et al.’s [27–28] model of QOL in cancer survivorship, we developed a semi-structured interview that specifically assessed social/relational QOL, defined as the impact of testicular cancer on romantic/sexual relationships, along with personal/experiential (e.g., romantic history) and environmental characteristics (e.g., social support). The interview consisted of three open-ended prompt questions, each containing a series of follow-up questions (see Table 1). Content validity of the interview questions was established through multidisciplinary expert review, including a medical oncologist and an oncology nurse who specialize in testicular cancer, as well as a psychologist and an adolescent medicine specialist with expertise in adolescence/young adulthood.
Individual interviews, lasting 18 minutes on average, were conducted by an experienced interviewer, audio-recorded, and transcribed. The interviewer took field notes, listened for organization in participants’ responses, and developed and tested hypotheses throughout the interview. For example, several participants answered “It’s alright” or “It could be better” in response to a question about how satisfied they were with their romantic life. Given this type of response, the interviewer asked questions such as, “Tell me what you like and don’t like about your romantic life” or “Tell me what would make your romantic life better.” Following interview completion, demographic (e.g., age, race/ethnicity) and medical (e.g., date and type of diagnosis) information was obtained through medical chart review.
Interview data were managed using ATLAS.ti 5.0  qualitative software. Data were analyzed using inductive thematic analysis, a data-driven, bottom-up approach where the themes identified are strongly linked to the data themselves . Guided by the inductive thematic analysis approach described by Hayes , three raters carefully read each interview transcript to identify units of text relevant to the research topic. Those units of text reflecting the same issue were grouped together in analytic categories (i.e., codes) and given provisional definitions. Thereafter, the data were systematically reviewed to ensure that a name, definition, and a set of data to support each category were identified. The inductive thematic analysis resulted in 18 categories which were subsequently grouped into 4 key 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. These four themes were identified as patterned responses or meanings within the data set and captured something important about the data in relation to the research question of interest . Verbatim quotations representative of each theme were also identified. In cases where multiple relevant quotations were available, those quotations which provided greatest evidence for interpretations of the data, as well as those quotations which contributed to a greater depth of understanding of participants’ experiences related to testicular cancer, were selected for inclusion .
Two mechanisms were utilized to assess validity of the results. First, hypotheses generated from early data analysis were tested against analyses of subsequent data. Those hypotheses generated from early data that were unsupported by subsequent analysis of data were discarded. Second, three individuals (i.e., first author, two research assistants) read and analyzed all transcripts. Overall inter-rater consistency was high, with any differences between raters resolved by discussion.
As depicted in Table 2, the current mean age of the 21 participants was 27.1 years, range 18 to 34 years, with an average time since treatment completion of 16.5 months. Most participants were currently partnered (n = 14; defined as dating, engaged, or married) and had remained in a partnership since treatment. A smaller group (n = 7) reported being unpartnered and uninvolved in dating since testicular cancer treatment. Survivors received a range of therapies, including orchiectomy, retroperitoneal lymph node dissection, radiotherapy, standard dose chemotherapy or high dose chemotherapy with peripheral blood stem cell transplant. Only one participant reported opting for testicular prosthesis.
Survivors reported symptoms such as a swollen testicle/scrotum or pain in the scrotal area/lower back for up to two months before seeking treatment: “I happened to just check one day and I was like ‘Oh!’ and a month later I went to the doctor…it’s just the stubbornness of a guy, okay, it’s not a big deal” (Participant 2). Survivors also reported convincing themselves that the symptoms could not be testicular cancer: “Most guys have that ego where, ah, it’s probably nothing. I had that same ego at the time, I’ve never had the flu or anything, so I’m like there’s no way I’m sick. Yeah, I’d definitely say it’s the masculinity that gets in the way” (Participant 17). Repeated prompting by romantic partners was often the only reason survivors finally sought care. However, care-seeking was associated with significant discomfort and embarrassment when describing symptoms to women healthcare providers: “When I went to the emergency room, the check-in desk at the emergency room, there was two young girls working there. I’m only 25 years old and they kept asking me what the problem was and I kind of pointed down there…I was embarrassed to say that I have a big knot down there” (Participant 19).
As a result of having experienced testicular cancer, survivors described feeling different from others: “You consider life a little bit differently and your realities would be for a shorter time period instead of longer so, yeah, there are some changes, especially on my values” (Participant 4). Feeling different from others was also interpreted as being abnormal: “I look at things differently than a lot of people though, so I’m kind of a little bit on the abnormal area, I suppose” (Participant 1). This sense of being different contributed to survivors feeling that others without a testicular cancer history could never fully understand the cancer experience: “They know that I had cancer, but to them, if it didn’t kill you then you’re fine…they don’t know how I feel, they don’t know how I think, they don’t know what it feels like but they’ll tell you ‘well, you ought to do this or I would do this.’ They don’t know, they don’t have a clue” (Participant 19).
For partnered survivors, being different from others was for the better: “When I got married I guess because of being a cancer patient I felt like the marriage was, I took it a little more seriously than I might have before” (Participant 1). This was similarly the case for Participant 15, who indicated, “It was better for our relationship, it made us realize that we wanted to be together, and so settled me down from, got me more focused on maturing and growing up, stuff like that. So, if anything, it was better for our relationship.”
The feeling that being different from others was for the better was not as true for unpartnered survivors. Rather, unpartnered survivors expressed worry regarding how their changed persona would resonate with future potential romantic partners: “They said one of the things that can happen is infertility, and I thought with all the health problems that I had, I do not want to pass it onto somebody else, no, no, no, definitely not. My thought is if they ever wanted kids, I would probably adopt, as opposed to making my own…I guess it’s just something I will deal with when the time comes” (Participant 13).
Another salient theme among AYA testicular cancer survivors centered on how being different from others by having survived testicular cancer made one damaged goods. Hair loss due to chemotherapy emerged as an important issue:
“Losing my hair was probably more devastating that losing my testicle I think. Because I went from liking my hair to having none in about three days. And that was a big adjustment. Even though a lot of guys you see on the street shave their head, and have short hair…when it first happened midway through the chemotherapy…I hadn’t shaved in three or four days or whatever, it was just falling off. That was probably as devastating as anything, for me. It was just like, wow” (Participant 1).
Similarly, surgical scars were an issue for survivors, especially as these were permanent: “Because the scar, especially from the radical lymph node dissection, is quite obvious. It’s like, a twelve inch scar is hard to hide. That’s probably the biggest problem. Is that even if I did not want to tell anyone, there’s no point in lying” (Participant 9).
Perceptions of being damaged goods also extended into survivors’ feelings regarding the loss of a testicle, which included feeling incomplete, feeling unsure of one’s masculinity, and feeling generally vulnerable: “It just feels kind of like you’re incomplete. Just as a person you feel like you’re missing something you’re supposed to have. I guess it’s just the fact that it doesn’t have any real effect but there’s still something missing. So it’s just that weird dichotomy…” (Participant 9). This sense of incompleteness was also linked to questions about masculine identity: “It’s just the part about being a man and the man having that ability to, and also losing part of that is like losing a part of yourself” (Participant 2). Partnered survivors reported significant hesitation and postponement of sex following testicular cancer treatment: “There was a time…in the first intimate moments…and you’ve had your testicle removed, you’re a little unsure of yourself” (Participant 1). This hesitation was present despite the fact that survivors considered their partners to be immensely supportive and understanding. Moreover, losing one’s testicle also made survivors feel vulnerable, particularly as it concerned the possibility that the remaining testicle could be subject to cancer in the future: “It’s something I’ve always had so losing any kind of body part, organ or anything just, you know you’ve only got one left. So, if it gets compromised and it has to be taken out…at least I guess it’s not a lung or…” (Participant 6).
The experience of testicular cancer made unpartnered survivors concerned about disclosure of their testicular cancer history to potential romantic and sexual partners, a concern that was not relevant to partnered survivors: “I do have a few hang-ups about it, just saying that I have cancer to new people. Pretty much towards potential romantic partners. Because in class I don’t have a problem if we’re discussing something like that, it doesn’t really bother me. But, of course, usually in class I don’t specify what type…just because in my mind it takes it to a much more intimate conversation than if it was skin cancer” (Participant 9). Concerns also emerged regarding the best time to bring up one’s testicular cancer history with a potential partner: “I always wonder if it’s a first thing or, I don’t know. I guess it kind of depends on who the person is at this point, because I don’t really…since I haven’t told anyone yet, I don’t really have any baseline to say, ‘well that was a really bad idea to say on the first date.’ Or, ‘wow, they got really mad because I didn’t tell them until two months into the relationship’” (Participant 9). Unpartnered survivors also reported uncertainty in general at the thought of having future romantic partners: “I kind of don’t want to drag anybody into all of this stuff right now. It’s a lot of stuff to swallow, going through all of it. I guess my point of view is that I always just thought who would want to get involved right now?” (Participant 5).
For partnered survivors, hesitation regarding disclosure of testicular cancer to other men was salient, as they perceived an overall lack of seriousness regarding the topic. These fears were confirmed by survivors who had disclosed their testicular cancer history to other men: “I had friends joking with me and stuff about it. It was all in good fun I guess but yeah sometimes it bothered me. I’m thinking, I’m fine now. You really can’t tell it’s not there” (Participant 6). However, disclosure as part of an advocacy role was sometimes stronger than any personal fears of disclosure: “I tell anybody that’s around my age that’s a dude, like all my friends, my co-workers, everybody who knows me now, even up to like 35, like I think they’re in that age range, you know I tell them to check their boys or whatever because anything that might be questionable go get it checked out” (Participant 17).
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 [4–6]. 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 . 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 . 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” . 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 , 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 . Sensate focus has been previously adapted to assist persons with cancer and other medical problems . 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.
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, 24, 40–41). 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 .
This work was supported by funds from the Indiana Clinical and Translational Sciences Institute (KL2RR025760-02) and the Walther Oncology Foundation to the first author.
No conflicts of interest exist.