During the past decades growing focus has been placed on assisting individuals diagnosed with cancer on mentally coping with the disease as they continue their life beyond the stage of primary therapy and successful recovery. In this regard it has been shown that there are different ways of perceiving this experience leading to a variety of cancer-related identities (CRIs). Especially meaning making by adopting an active CRI and identifying as a “cancer survivor” has been advocated as beneficial (7–9).
In this analysis of 3347 men affected by prostate cancer (PCa) with a mean follow-up of about 15 years since radical prostatectomy, most men self-identified as “someone who has had cancer” (43.9%) followed by “patient”, “cancer survivor”, and “cancer conqueror”. Only few men believed that “victim” would describe them best (2.1%). These results are in accordance with previous research on men affected by PCa showing that, while the majority of such men favors a more neutral term, such as “someone who has had cancer” as self-description, identification with regards to a cancer experience may vary widely (8, 9). However, as we applied a forced choice response, we do not know whether men would find other self-descriptions nearly equally appropriate. It may be that men might choose more than one CRI. Thus, CRI not chosen do not necessarily imply negative appraisals.
Results indicated that men who preferred the more neutral term “someone who has had cancer” were more likely to have experienced PCa with an oncological uneventful follow-up (no biochemical recurrence) and less likely to report profound, positive changes derived from their cancer experience (benefit finding). These findings support previous studies finding that individuals who preferred a more neutral term considered their disease often as something unthreatening of their past and “hardly ever think about their disease” 5,(10). For men who self-identified as “someone who has had cancer”, PCa did not hold the centrality in their life sufficient to trigger the development of an active CRI (26). Since PCa is generally linked with long term survival, many men prefer “someone who has had cancer” over terms such as “cancer survivor” as self-description in the present as well as in previous studies (11).
A characteristic adversity of PCa is that, despite an excellent survival prognosis, biochemical cancer recurrence, requiring subsequent therapy, is seen in a considerable number of cases even 10 years after primary therapy (17, 27). In this study sample at least a fifth reported a biochemical cancer recurrence at survey and/or an ongoing therapy. Men in this situation, characterized by cancer as a current medical condition rather than an overcome life event, were more likely to perceive themselves as “patient”. This agrees with a study from Thong et al., showing that treatment, cancer recurrence or lingering cancer/therapy-related symptoms after primary cancer therapy were associated with self-identification as “patient” (12). Men who self-identified as “patients” were less likely to consider their disease to have high severity, and no association between self-identification as “patient” and psychological distress was found. In contrast to previous studies, this suggests that identification with the more passive term “patient” is not necessarily associated with a more demanding disease burden and that a general denunciation of the term for individuals affected by cancer might be premature (10, 12).
Studies on cancer survivorship and CRIs have proposed that adapting the identity of a “survivor” is a sign of actively engaging and coping with the cancer experience (7). Analyses of narrative data have suggested on the one hand, that identification as “cancer survivor” is often based on having experienced the disease as a serious life event, and on the other hand, a feeling of having successfully overcome the disease (7, 28). These aspects are supported by the findings of this study showing that men who self-identified as “cancer survivor” were inclined to report high perceived disease severity. Further, these men were also more likely to have endured a biochemical recurrence during follow-up, while simultaneously being more likely to be biochemical recurrence-free at survey. This supports that overcoming a subjectively and objectively more stressing disease course may lead to the endorsement of a “survivor” identity. Moreover, previous research has suggested that adapting a “survivor” identity may bring forward positive changes driven by the disease experience (7, 10). These assumptions are supported by findings of this study showing an association between a “survivor” identification and high benefit finding. However, men favoring self-description as “survivor” were also less likely to report high well-being. These results contradict previous findings proposing a positive effect of adopting a “survivor” identity on psychological health and well-being. Consequently, findings here show that the implications of a “survivor” orientation may vary between individuals affected by cancer.
A previous review of CRIs pointed out that acceptance of the term “cancer survivor” derives partly from positive portrayal of the concept by survivorship movements in the media and support groups (11). It should be noted that cancer survivor culture and research on CRIs is mostly based in the U.S., while cultivation of the term “survivor” or its equivalent translations is rather seldom in Europe(11, 29). Limited exposure to a positive depiction of survivorship might lead to inter-individual and intercultural differences in the understanding of the term and concept (30). One should consider that without reference some individuals may choose a “cancer survivor” identity not as a sign of active coping, but rather to reflect the burden of being confronted by fundamental changes and a sense of near defeat derived from their cancer experience. Therefore, identification as “cancer survivor” might be for some an expression or even a cause of diminished psychological well-being.
In contrast to identification as a “cancer survivor”, which seems to be influenced by an objectively and subjectively demanding disease course, endorsement of the term “cancer conqueror” was not associated with any clinical factors or the perceived disease severity. This suggests that adapting this kind of identity, putting further emphasis on actively defeating the disease, might not be grounded on a certain disease course but rather on personal character traits influencing the general outlook on life. This is supported by findings here showing that identification as a “cancer conqueror” is associated with high well-being as well as high benefit finding, which may reflect a generally optimistic attitude.
As in previous studies of men affected by PCa only a minority self-identified with the term “victim”, stressing the seemingly pitiful fate of individuals diagnosed with cancer (8, 9). Most studies on the subject have found that endorsement of this submissive CRI is associated with psychological distress (7–10). This is supported by the findings from this analysis showing that men self-identifying as “victim” were more likely to have a positive depression screening and low well-being. It should be noted that while these men were more likely to perceive the severity of their disease as high, objective clinical factors did not differ much between these men and men self-identifying as “patient”, the group with the lowest perception of high disease severity.
Study findings must be considered within the limitations of the analysis. Limited by the cross-sectional design, causal assumptions on development of CRIs should be further investigated in longitudinal studies. By only including men primarily treated with radical prostatectomy generalization towards all men affected by PCa is limited and implications for other cancer types should be treated with caution. The variety in CRIs suggests that different terms may be equally appropriate in addressing men affected by PCa and that, though these men select a preferred identity when prompted, the remaining identities don’t necessarily have any negative connotations and when given the choice some men would have picked several identities to describe themselves with regard to their cancer experience. Nevertheless, the CRIs were distinctively associated with different clinical circumstances and psychological factors.