Cancer-related self-perception in men affected by prostate cancer after radical prostatectomy

Life expectancy after diagnosis and treatment for PCa is high due to early detection and effective treatment options [12]. Nevertheless, the psychological weight of a cancer diagnosis, fear of disease progression, and treatment side effects are a psychological burden for many men affected by PCa [7]. Therefore, it is important to learn more about the psychological adaptation of these men.

In this analysis on 1,772 men affected by prostate cancer (PCa) with a median follow-up of 4 years after radical prostatectomy, most men self-identified as “someone who has had cancer” (46.8%) followed by “patient” (35.4%). Less than 20% of men perceived themselves as “cancer conqueror” or “cancer survivor” and only a minority of men reported that “victim” would describe them best (1.8%). These results are in accordance with previous research on men affected by PCa, which has shown that, while the majority of these men identify themselves with neutral term such as “someone who has had cancer,” cancer–related self-perception with regard to one’s personal PCa experience may vary widely [8]. Moreover, compared to the results of our previous study on men affected by PCa with a very long follow-up (median 15.6 years), no major differences in the distribution of cancer-related self-perception can be observed. However, in this previous study, twice as many men (16.8%) self-identified as “survivor” while self-identification with “someone who has had cancer” and “patient” was somewhat lower, suggesting that the adaptation of a “survivor” identity might develop with higher age and years after cancer diagnosis and subsequent therapy. Additionally, by adding data on functional outcome after radical prostatectomy as well as detailed psychological data, reflecting cancer-related distress and psychological adaptation, we were able to further expand the understanding of cancer-related self-perception in men affected by PCa in this study.

In men who self-identified as “someone who has had cancer,” PCa was more often diagnosed in an organ confined stage with fewer oncological risk factors. Consequently, these men were more likely to have experienced no tumor recurrence after primary therapy and were less likely to require adjuvant therapy. Further, these men reported a high postoperative rate of continence (77.0%) and the highest rate of postoperative sexual activity (76.6%), and were less likely to be affected by cancer-related distress. These results show that due to efficient early detection of PCa, enabling primary therapy with excellent oncological and functional outcomes possible, the personal PCa experience in many men does not have the psychological demanding weight to trigger a deeper, more active cancer-related identity [26]. Qualitative studies have revealed that these men perceive their cancer experience as something of the past [24]. Taken together, this suggests that state of the art early detection and treatment options enable PCa therapy that not only guarantees a long overall survival but also a minimal burden on the physiological and psychological quality of life beyond cancer therapy.

One third of the men surveyed in this analysis self-identified as “patient.” These men were more likely to have experienced cancer recurrence or to receive an ongoing PCa therapy. For these men, PCa is a continuing reality rather than an overcome life event. Therefore, it is not surprising that these men were also more likely to report cancer-related distress. However, this distress does not seem to be a consequence of therapy side effects from primary therapy, as these men were also more likely to be continent at survey. Further, most men who identified as patient did not report high perceived disease severity and did not display a deficit in their quality of life compared to the age-matched men from the general German population [27]. This is in contrast to previous studies that have suggested that continued self-identification as “(cancer) patient” after primary therapy might be a sign of submission and passiveness, which might lead to a reduced psychological well-being [10, 29]. Data of our analysis show that the term “patient” might rather be favored as neutral description of an ongoing interaction with a medical condition and its required treatment phases. Such a way of self-perception might be especially common in cultures with clear and direct social traits such as Germany and therefore explain the difference between our data and data from the USA.

In most scientific literature, individuals affected by cancer after primary therapy are in general referred to as “cancer survivors” [28]. The term originates from the commonly used terms “overall survival” or “recurrence free survival,” which describe the time length of survival after diagnosis in order to illustrate the aggressiveness of a certain kind of cancerous disease. Further, 3 or 5 years of recurrence free survival are often considered as time frames, which indicate that individuals affected by cancer might be considered as cured [28]. With growing research on cancer survivorship, the term “cancer survivor” has also been advocated as proper description of individuals affected by cancer regardless of disease course in order to emphasize resilience and personal strength in one’s “fight” against cancer. In support of such a mindset, public cancer survivorship movements have become a part of especially North-American culture [8]. However, research has shown that a large portion of individuals affected by cancer does not identify as much with the term, especially when lacking a socio-cultural support background, that has branded the term as something empowering [16, 28]. Additionally, men affected by PCa have stated in previous studies that they did not experience PCa as such a threatening event to be reflected in the term “survivor”[4, 16, 21]. The data of this analysis reflects this. Identification with the term “survivor” was lower than in studies from the USA, showing that outside of the US identification with the term is less popular and might be interpreted differently [2, 8]. Men who endorsed the term “survivor” were more likely to have a high perceived disease severity and reported more often fundamental life changes (benefit finding) due to their cancer experience reflecting the idea that in order to feel like a “survivor,” one has to overcome a life event with a certain gravity. Moreover, these men were more likely to be incontinent at survey. Incontinence is one of the most psychological demanding side effects of radical prostatectomy and may have a great impact on the quality of life [3, 15]. Taken together, this illustrates that in this analysis men affected by PCa did not identify with the term “survivor” in order to reflect a cured disease state or to actively embrace their personal achievements in the fight against their disease but in order to express being burdened by the therapy and its long-term consequences. In such a context, men affected by PCa may consider themselves as wounded “survivor” of PCa and radical prostatectomy.

Research on how to incorporate a cancer experience in one’s identity has shown that some individuals choose to embrace actively engaging with their disease as part of their identity and that these individuals might benefit from such approach with better psychological well-being as well as disease coping [10, 19]. In the survivorship movements in the USA, an identification as a “cancer survivor” has been promoted as an exemplification of such active approach. But as being mentioned above without the proper context, the term might not feel as suitable to individuals affected by cancer that want to incorporate an active overcoming of their disease within their identity. In this survey, men were given the option to choose the more exaggerated term “cancer conqueror” to express such an outlook on their PCa experience. Men who chose “cancer conqueror” as self-description were less likely to report cancer-related distress or an ongoing therapy and were more likely to report higher quality of life as well as high benefit finding. These results suggest that a rather confident and active way of cancer-related self-perception in men affected by PCa might be a sign of a good psychological adaptation and that these men should be encouraged in embracing such an empowering approach. Another explanation for these results might be that a so far indistinct moderator such as an optimistic and extroverted personality might give rise to a rather confident and active way of self-description as well as lower distress and higher psychological well-being.

Only a minority of men in this analysis self-identified with the term “victim,” which stresses the seemingly pitiful fate and demanding therapy side effects of individuals diagnosed with and treated for cancer. Most studies on the subject have found that self-perception as a “cancer victim” is associated with psychological distress [8]. Interpretation of the data on men that self-identify as “victims” are limited as they only make up a small portion. Nevertheless, our data suggests that these men were more likely to be burdened with incontinence, high perceived disease severity, and anxiety, indicating the need for further psycho-oncological support.

The findings of this analysis have to be considered within certain limitations. Due to the cross-sectional design, causal assumptions on development of certain aspects of self-perception after radical prostatectomy should be further investigated in longitudinal studies. It is unclear whether certain psychological conditions after being affected by cancer might trigger identification with a certain cancer-related self-perception or whether actively embracing an empowering cancer-related identity might lead to increased psychological resilience and comfort. By only including men, who were primarily treated with radical prostatectomy, generalization towards all men affected by PCa is limited, and implications for other cancer types must be treated with caution. However, radical prostatectomy, which leads to sudden and potentially permanent changes in the lives of affected men, is the most common form of primary therapy for men with localized PCa. Therefore, our data on a large sample of nearly 1800 men represents a substantial portion of men affected by PCa, who often require continued medical assistance after primary therapy. All information on the functional outcome after radical prostatectomy are patient reported and therefore do not equal a clinical diagnosis. Nevertheless, assessment prior and post-surgery validates their clinical strength. Men were prompted to choose one of 5 terms that described them best with regard to their PCa experience. By applying forced choice, our data might represent self-perception after radical prostatectomy for PCa somewhat one-dimensionally. However, the different ways of self-perception were uniquely associated with distinctive clinical and psychological factors implying clinical relevant variance in the measured self-perception.

To conclude, most men with localized and effectively treated PCa perceive themselves in a neutral way, which represents their disease experience as something of the past such as “someone who has had cancer,” and it seems appropriate to address these men in such a way. Nevertheless, self-perception after treatment for PCa with radical prostatectomy can vary widely and is associated with distinct clinical and psychological characteristics that reflect the experienced severity of the disease, therapy side effects, and psychological well-being. Therefore, the assessment of cancer-related self-perception can give important insights when evaluating men affected by PCa who need assistance in coping with their disease.

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