Of the extant literature on YA cancer survivors, sexual health research is often focused on sexual functioning as an obstacle to reproduction [23]. Of the extant research, much is quantitative, thus failing to center around the voices of the YA survivors. Our key themes of “missing out/aging out,” inability to please (potential) partners, body image, and unmet needs for support provide novel data to assess the interplay between sexual well-being and functioning. Additionally, most of these constructs surround one central theme: social comparison.

Social comparison theory is often used to assess the context within which young adults navigate the world. It states that self-evaluation is often used to obtain information about the self, as compared to others; self-enhancement, meanwhile, is often a protective factor that is used to enhance feelings about the self and maintain positivity toward the self [24]. In this study, we see this self-evaluation when participants note their sexual abilities and/or body image compared to others (e.g., “I think my parents probably have more sex than we do”; “no one’s going to want someone who can’t like go down on them if it’s a woman or like give them a blowjob if it’s a guy”). Self-enhancement is demonstrated in those who have begun to accept their newfound relationship with sex and sexuality (e.g., “like the way that society views us as like aging… I don’t believe any of that, but that’s like the — that’s what we’re force fed from youth”; “And while that sucks because it feels like, you know, the clock is just going…it’s also okay because this is where I need to be while I need to be there”). These two constructs of social comparison theory likely provide a window through which we can interpret this interplay between sexual functioning and sexual well-being.

Previous research has identified a need to assess dating and relationships in childhood cancer survivors from the perspective of “missing out” on key milestones, particularly dating and intimacy [25]. Although this was not an a priori research area of focus, it was elicited by open-ended questions about post-treatment life among survivors. This self-evaluative construct was identified by participants stating they were “aging” or “missing out.” Previous research among cancer survivors has often pulled out a theme of “dying out” or “loss” of a sexual life [26, 27]. While our results are similar, there was a clear differentiation of “missing out”—that is, most of our participants spoke of sexuality as temporarily missing, but feeling as though this was not permanent. This may speak to the younger demographic of our sample—it is possible that older survivors may be more inclined to view sexuality as “lost” with age, with a permanency that our sample did not demonstrate. Additionally, many participants commented on their chronological age, feeling as though they were aging out of a sexual prime, despite being young (e.g., “we often feel like we’re 50 or 60”; “sexuality is such an important part of young adults…Tamoxifen is really holding me back”). Previous research on YA survivors of childhood cancer has noted a similar theme, identifying that these survivors often note that they face a dichotomization of feeling both like they were growing up faster than their healthy peers, while also feeling behind their peers as they miss out on key developmental events [28]. In this sample, “missing out” also connoted feelings of social isolation, induced by the assumption that same-age peers were having different experience and had expectations for body image and sexual functioning. Thus, for these participants, self-evaluation was used as a means to facilitate both the view that their sexuality was temporarily lacking, as well as noting a discrepancy between their life and the lives of others.

We see this same theme reflected in those who spoke about dating, or previously seeking romantic relationships. These participants spoke about clocks ticking and concerns that they might die before ever having found romance. However, within this sample, we also see a participant note acceptance about not being ready to date. This is a theme that has been previously reflected in research on women with cancer, who chose to temporarily pause their sexual lives [29]. This sense of choice may lead to acceptance—by choosing to put dating or sexuality on pause, survivors might be able to gain a sense of acceptance of their own trajectory and raise a barrier against the feelings of aging or missing out on perceived norms. In choosing such a trajectory, we also see an example of self-enhancement; participants are readily able to accept their situation as a means of ensuring that they do not feel that they have lost a significant part of their life.

However, there is a similar theme of acceptance that becomes delineated between those in relationships and those not in regard to sexual abilities. Previous research has identified a feeling of guilt or a sexual “need to provide” for those who have had cancer [27, 30]. This is a clear theme among these participants when describing relationships, who identified using keywords such as “ruined,” “loss,” and “frustrated” in regard to their sexual relationships. However, for one participant, it became less of a negative emotion about guilt and more about her partner’s reaction to that loss (“that’s the main problem with my husband right now”), signifying that for some participants, there may be an underlying dissatisfaction with the relationship. One participant stated acceptance with their sexual situation; interestingly, this is a participant who is clearly without a committed relationship. Thus, we once again identify a theme of those without a committed relationship having an ability to navigate their sexual well-being and dating life in a way that those tethered to others are identifying negative effects. It may be that partners provide an easy way to facilitate and promote social comparison, thus making it easier for cancer survivors to identify areas in which they feel that they are lacking, compared to others.

Similarly, when participants spoke of partner reactions to body image during sex, they spoke of negative experiences reengaging in partnered sexual activity. In that way, it seems as though those who are married/in committed relationships may not have the same negative partner reactions during sex. Previous research has identified a similar theme about how a past of negative partner reactions creates a fear of future partner reactions [31]. This begs the question for future research as to whether those who are married/in committed relationships are less likely to receive negative reactions from their partners during sex. For contrast, when we step away from the direct action of sex and focus on relationships as a whole, the excerpts were much more optimistic in tone, focused on positive partner reactions to body changes and reclaiming the boundary of partner vs. caregiver. Whereas previous research has described women attending medical appointments alone in order to avoid upsetting their partners [32], in our study, this was seen more as a sign of independence and bodily autonomy.

There was a recurring theme in this sample of a focus on individuality, rather than partners. For instance, previous research surrounding sexually missing out has discerned, in regard to sex, a focus on the couple, or of a “shared loss” [27, 33]; these results, however, have a significant focus on the self instead of on the partner (e.g., “it feels like the best part of my sex life is gone” and “that’s how I feel, basically, and I hope it gets solved soon”). These data are also novel in that they demonstrate a difference between how one perceives themselves and concerns about how others would see them, especially regarding body image. Previous research has identified that cancer patients and survivors, particularly women, have a very dichotomized take on their relationship with their body: women who did not like their body, and women who were afraid to show their body to partners [29]. These data present a merging of these two concepts, wherein some women like the way that they look until they are in an intimate situation (as demonstrated by the final body image excerpt). This may reflect a lack of counseling surrounding sexuality changes and intimacy issues for cancer survivors, as we know that very little outside of sexual functioning is often spoken about to survivors as potential side effects [32, 34].

Indeed, that lack of counseling is reflected in the final theme of unmet needs for support, which illustrated a lack of medical advice surrounding sexual functioning and sexual well-being. Previous research has identified a focus on sexual functioning [32, 34] —thus placing those in sexual relationships with more knowledge than those who are not, and completely eliminating discussions about outside of the realm of sexual functioning. This focus is likely due to an assumption that doctors are there to help their patients survive their disease, nothing more [32, 34]. However, there are times where sexual functioning may not even be mentioned [35], prompting this theme of sexual health as an unmet need. This is clearly reflected by the participant who spoke to this matter, who spoke about both a lack of discussion on sexual functioning and sexual well-being. To that end, these data prompt a discussion about the medicalization of cancer, and whether patients feel that they can bring their questions that do not focus on survivability to the table. Since YAs are likely to still be in the process of developing their identity as sexual beings, they may be less equipped than older adults to identify and ask healthcare providers for what they need support with. Comfort, normalization, and open communication about sexual well-being is therefore especially necessary to this age group.

Regardless of age group, however, it is important to note that unmet needs may be exacerbated in certain subpopulations of cancer patients and survivors. LGBTQ + participants may be less inclined or able to discuss their sexual health needs with their care team, as in order to do so, they must disclose a significant part of their identity—and there could be concerns that such disclosure might impact the care they receive [36]. Similarly, research has identified that racial and ethnic minorities often endorse more unmet needs than non-Hispanic White participants; it is possible that, even with the limited sexual information that our participants endorsed, non-White and/or Hispanic cancer survivors may be provided even less information [37].

It would be also be remiss not to mention that the data being reported on in this study are being read through the lens of heteronormativity and monogamy. Future research should identify ways in which cancer survivors who identify as LBGTQ + and/or engage in non-monogamy navigate their sexual lives. Health care professionals, when providing sexual health information, may assume that a patient identifies as heterosexual; one study found that only 25% of providers inquire about a cancer patient’s sexual orientation [38]. It would be important to assess how differences in LGBTQ + individuals and within queer relationships impact the relationship between sexual well-being and sexual functioning.

As such, there are a few noteworthy limitations to this study. The study sample of cancer survivors was heterogenous with respect to biological sex, type of cancer, sexual orientation, and religion. Given this, it is possible that interest in sexual activity—or discussing sexual activity—may differ by type of cancer (e.g., cancers affecting genitalia), sexual orientation (e.g., non-penetrative sex), and/or religion (e.g., concerns surrounding sex before marriage). Notably, given our small number of participants, subgroup analyses would have been impossible. Future research should seek to assess these data with subpopulations of YA cancer survivors in order to assess the intersection of sexual functioning and sexual well-being among subpopulations, particularly sexual orientation. Second, as noted earlier, questions surrounding sexual activities were only asked of those who self-reported sexual activities during the interview; therefore, the data presented likely do not gather all thoughts about sexuality within this population. Future work should assess unmet needs for support in the context of clinical care surrounding sexual health. Additionally, relationship functioning and status were not necessarily probed. Future research should assess whether these distinctions in themes established in this study track with specific relationship statuses.

In sum, these data provide insights on the interaction between sexual functioning and sexual well-being among YA survivors of cancer, particularly with regard to missing out/aging out, inability to please (potential) partners, body image, and unmet needs for support. Given these findings, it is apparent that there need to be renewed calls for both individual and relationship counseling on sexuality, wherein survivors can discuss both issues that they may face on their own, as well as in the context of a partnered relationship. Such counseling, particularly for the survivor, might focus on ensuring that social comparisons do not serve to further hinder the ability to participate or be interested in sexual activity. Healthcare providers may initiate such counseling by engaging in the PLISSIT model, ensuring that they ask an open-ended question about sexuality and sex with their cancer survivors and patients at every appointment, allowing the participant to know that the provider is open to answering questions surrounding sexual health [39]. Similarly, it would behoove local governments to adapt sexual education materials tailored to those with or survivors of chronic illness, who may not be as readily able to obtain such information.