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

Cancer-related self-perception in men affected by prostate cancer after radical prostatectomy Purpose To identify factors associated with cancer-related self-perception after being affected by prostate cancer (PCa) and radical prostatectomy. Subjects and methods Men affected by PCa and radical prostatectomy were asked to choose one of 5 cancer-related identities (“patient,” “victim,” “someone who has had cancer,” “cancer survivor,” and “cancer conqueror”). Associations with clinical data, functional outcome (continence and sexual activity), and psychological factors were assessed. Results One thousand seven hundred seventy-two men were included. Most men perceived themselves as “someone who has had cancer” (46.8%) which was associated with no cancer recurrence (OR: 0.54 [0.36–0.81]) and low cancer-related distress (OR: 0.69 [0.53–0.89]) or “patient” (35.4%) which was associated with ongoing therapy (OR: 2.59 [1.59–4.22]) and biochemical disease recurrence (OR: 1.91 [1.28–2.85]). Self-perception, as “cancer survivor” (7.8%), “cancer conqueror” (8.2%), or “victim” (1.8%), was less common. “Cancer survivor” was associated with high perceived disease severity (OR: 2.07 [1.33–3.24]) and incontinence (1.99 [1.27–3.12]). “Cancer survivor” and “cancer conqueror” were related to high benefit finding (OR: 2.05 [1.30–3.23], OR: 1.89 [1.27–2.81], respectively); only “cancer conqueror” was associated with higher quality of life (OR: 1.38 [1.21–1.58]). Conclusions Self-perception in men affected by PCa can vary widely and is associated with distinct characteristics that reflect the experienced severity of the disease, therapy side effects, and psychological well-being. Implications for Cancer Survivors The assessment of cancer-related self-perception can give important insights when evaluat- ing men affected by PCa who need assistance in coping with their disease. Keywords Prostate cancer · Cancer-related identity · Self-perception · Cancer survivors · Survivorship · Radical prostatectomy Background can be treated successfully, guaranteeing long-term survival [9]. However, living with a history of PCa beyond primary With an aging population along with improvements in early therapy is in many cases still accompanied by a wide range detection, there are approximately 450,000 men diagnosed of hardships deriving from factors such as distrust in one’s with prostate cancer (PCa) in Europe annually [12]. In most body and therapy side effects, most significantly incontinence men, PCa is diagnosed in an early, symptomless stage and and erectile dysfunction [7, 25]. Further, an ongoing cancer follow-up may cause lingering existential fears of a tumor progression leading to a symptomatic metastasized disease * Matthias Jahnen [21]. Taken together, this has placed growing importance Matthias.jahnen@tum.de on advising men affected by PCa on how to process their Department of Urology, Klinikum rechts der Isar, School cancer experience and how to integrate it into their personal of Medicine, Technical University of Munich, Ismaninger self-perception. Str. 22, 81675 Munich, Germany In this regard, it has been proposed that the adaptation Department of Psychosomatic Medicine and Psychotherapy, of an active cancer-related identity, which accentuates Klinikum rechts der Isar, School of Medicine, Technical overcoming the disease, might help coping with cancer and University of Munich, Langerstr.3, 81675 Munich, Germany Vol.:(0123456789) 1 3 Journal of Cancer Survivorship its therapy side effects [10, 24]. Particularly in the USA, side effects, and specific cancer-related distress has so far not the concept of survivorship and identification as a “cancer been investigated. survivor” has been advocated for individuals affected by This study addresses these remaining issues regarding cancer in order to encourage such a way of self-perception cancer-related self-perception in men affected by PCa by [8, 19]. Furthermore, it has been proposed to abandon analyzing a large sample of German men 1 to 12 years after terminology such as “patient” or “cancer victim,” which radical prostatectomy. First, it was assessed how these men connotate a more passive stance and are regarded as contrary self-identify with the following 5 cancer-related identities: towards developing a positive self-perception when being “patient,” “victim,” “someone who has had cancer,” “cancer affected by cancer [2 , 10, 20]. survivor,” and “cancer conqueror.” Second, differences in In several studies on individuals affected by diverse detailed clinical data, functional outcome (continence and types of cancer, self-identification as “cancer survivor” sexual activity), and psychological characteristic, reflect- has been associated with more active disease coping, ing the subjective cancer experience and its psychological higher participation in cancer-related activities, and better impact, between each cancer-related self-perception were psychological well-being[2, 8]. However, subsequent examined. Lastly, 5 separate multivariable models were cal- research has revealed that the majority of individuals affected culated to identify independent associations between cancer- by cancer rather identify with more neutral terms such as related self-perception and the analyzed factors, in order to “someone who has had cancer” without a major drawback demonstrate that differences in self-perception after radical in overall well-being [8]. Regarding men affected by PCa, prostatectomy may have clinically significant implications small US studies showed that a third of men affected by PCa for men affected by PCa. favor terms such as “cancer survivor” or “cancer conqueror” as self-description [2, 23]. In these studies, identification as a “survivor” was associated with positive affect, and it Subjects and methods has been suggested that adoption of a “survivor” identity might be associated with lower threat appraisal, thoughtful Study sample reflection, and gaining an understanding through peers [ 2, 23, 24]. This research implies that despite the in general Since 2006, men treated for PCa with radical prostatectomy good long-term survival prognosis, cancer-related self- at the Department of Urology of the Klinikum rechts der Isar, perception might influence psychological adaptation and Technical University of Munich, are asked prior to surgery overall well-being in men affected by PCa. In a recent study to participate in psycho-oncological research projects on men affected by PCa of a Germany wide research project and the hospitals PCa register, containing standardized with a median follow up of more than 15 years, we were sociodemographic, clinical, and functional data of all treated already able to show that differences in cancer-related self- PCa patients. These men are contacted annually via mail perception are measurable even years after primary therapy to complete ongoing questionnaires concerning current and that different cancer-related identities are associated clinical, functional, sociodemographic, and psychosocial with specific psychological factors. Further, we were able information. Further clinical and pre-surgical information for to show that some clinical factors such as cancer recurrence this analysis was obtained through the clinics PCa register. and ongoing therapy were associated with cancer-related All participants gave their written consent to participate. The self-perception, but that also the subjective experienced ethics committee of the Technical University of Munich has severity of the disease remained an independent major factor approved this research project. associated with a certain cancer-related self-perception. We For this cross-sectional analysis, men were contacted via found a positive association between high perceived disease mail between November 2019 and October 2020. Men who severity and self-identification as “survivor” or “victim” as underwent primary radical prostatectomy (without neoad- well as an association between low perceived disease severity juvant therapy) between one and 12 years prior to survey and self-identification with the less loaded term “someone and who answered the item regarding cancer-related identity who has had cancer”[14]. The subjective disease burden is were included (n = 1772). often not only a reflection of the disease itself but of the consequences and side effects from the necessary therapy. Radical prostatectomy is often associated with therapy side Measures effects such as incontinence and erectile dysfunction which influence men affected by PCa physically and psychologically Cancer‑related self‑perception especially in the first few years after radical prostatectomy. However, in which way, the development of a particular form Participants were asked to choose one of the following terms of cancer-related self-perception is associated with therapy that would describe them most suitable with regards to their 1 3 Journal of Cancer Survivorship cancer experience [2, 8, 10]: “patient,” “victim,” “someone asked to answer on a six-point scale ranging from “applies who has had cancer,” “cancer survivor,” and “cancer and hardly distresses me” [1] to “applies and distresses me conqueror.” severely” [5] (not applicable [0]). A sum score > 14 was used as an indicator for high distress. Following the QSC-R10, Sociodemographic and clinical characteristics all men were asked whether they desire psychosocial coun- seling [5]. The following sociodemographic data were included in this analysis: age at survey, current partnership, and children. Global health status/quality of life Clinical data included were age at surgery, time since surgery, presence of a second primary cancer, family history Quality of life was assessed using the last 2 items of the of PCa (yes: at least one consanguine relative with PCa vs European Organization for Research and Treatment of no), family history of cancer (other than PCa), PSA level at Cancer questionnaire (EORTC QLQ-C30). These two items diagnosis, histopathological Gleason grade group, organ- capture the overall health and quality of life in the past week. confined stage at RP according to TNM classification of Participants were asked to answer on a seven-point Likert 2002, biochemical recurrence (PSA level ≥ 0.2  ng/ml) scale ranging from “very poor” [1] to “excellent” [7]. Based during follow-up (at any time during follow-up vs ongoing on the standardized EORTC formula, the mean value of the at survey vs no), ongoing PCa treatment at survey, adjuvant two items was calculated to a score, ranging from 0 to 100. therapy (radiotherapy (+ / − androgen deprivation therapy) Higher scores indicate a higher quality of life [11]. vs androgen deprivation therapy vs no), and Royal College of Surgeons Charlson comorbidity index before surgery [6]. Perceived severity of the disease Functional outcome The perceived severity of being affected by PCa was assessed with the single item “Having had prostate cancer The following data on sexual and bladder function were is one of the worst things that happened to me in my life” assessed prior to surgery and post-surgery (at survey): (adapted from [30]). Participants were asked to answer on urinary continence (urinary continence was defined prior to a four-point Likert scale ranging from “strongly disagree” surgery in accordance to the International Consultation on [1] to “strongly agree” [4]. Responses (1) and (2) as well Incontinence Questionnaire Short-Form (ICIQ-SF). A sum as responses [3] and [4] were combined to “low perceived score > 5 was considered as incontinence [1]. Incontinence severity” and “high perceived severity,” respectively. post-surgery was defined in accordance with the 24-h pad test. The reporting of ≥ 1 wet pad within 24 h was considered Benefit finding as incontinence [13]); masturbation (in the last 4 weeks); and partnered sexual activity (any form of sexual activity Benefit finding was assessed using one item with high fac- performed with a partner) (in the last 4 weeks). Masturbation tor loading and high face validity adapted from the German and partnered sexual activity were further combined into version of the 17-item benefit finding scale: “My prostate a single variable (sexual activity independent of partner) cancer has helped me become more focused on priorities, in order to represent any form of sexual activity in the last with a deeper sense of purpose in life” [22]. Participants 4 weeks. were asked to answer on a five-point Likert scale ranging from “not at all” [1] to “extremely” [5]. Responses [1] and Depression and anxiety [2] as well as [3] to [5] were combined to “low benefit find- ing” and “high benefit finding,” respectively. Symptoms of depression and anxiety were assessed using the validated ultra-brief instruments Patient Health Ques- Statistical analysis tionnaire-2 (PHQ-2) and General Anxiety Disorder-2 (GAD- 2) scale. For both scales (range 0–6), a cut-off score ≥ 3 Descriptive statistics were calculated for all study variables. indicates a positive screening of depression or anxiety, Chi-square and Wilcoxon tests were applied for analyzing respectively [17, 18]. differences in cancer-related self-perception with regard to sociodemographic, clinical, and psychological variables. Distress and psychosocial counseling To identify variables independently associated with each of the 4 different ways of cancer-related self-perception Distress was assessed with the short form of the question- multivariable logistic regression with backward elimination naire on distress in cancer patients (QSC-R10) using 10 was used. Significance was set at p < 0.05. All analyses were items that capture cancer specific stressors. Participants were performed using SAS (Version 9.4). 1 3 Journal of Cancer Survivorship cancer-related distress were more likely to self-identify as Results “patient” (OR: 1.41 [1.07–1.86]). High benefit finding was associated with self-identification as “cancer conqueror” or One thousand seven hundred seventy-two men affected by “cancer survivor” finding (OR: 2.05 [1.30–3.23], OR: 1.89 PCa and primarily treated with radical prostatectomy with [1.27–2.81], respectively), and higher quality of life was a mean age of 70.9 years at survey (standard deviation associated with self-identification as “cancer conqueror” (OR: (SD) = 8.0) and a median follow-up of 4 years (first and 1.38 [1.21–1.58]). High perceived severity of the disease was 3rd quartile = 2–8) were included in the analysis (Table 1). associated with self-identification as “cancer survivor” (OR: Men self-identified most frequently as “someone who has 2.07 [1.33–3.24]) (Table 3) (all p < 0.05). Due to the small had cancer” (46.8%) followed by “patient” (35.4%). The sample size (n = 31), no multivariable logistic regression terms “cancer conqueror” and “cancer survivor” were model was calculated for men identifying as “victim.” favored by 8.2% and 7.8%, respectively. The least endorsed term was “victim” (1.8%) (Fig. 1). Men who self-identified as “someone who has Discussion had cancer” were the youngest at surgery, most often sexually active (76.6% vs. 64.1% (rest of the sample)) Life expectancy after diagnosis and treatment for PCa is high and had the lowest percentage of biochemical recurrence due to early detection and effective treatment options [12]. during follow-up (15.0% vs. 28.8% (rest of the sample)). Nevertheless, the psychological weight of a cancer diagno- Incontinence at survey was most often reported by men who sis, fear of disease progression, and treatment side effects self-identified as “cancer survivor” or “victim” (38.0% and are a psychological burden for many men affected by PCa 60.0%, respectively, vs 23.2% (rest of the sample)). These [7]. Therefore, it is important to learn more about the psy- men reported also most often high perceived severity chological adaptation of these men. of disease (61.5% and 90.3%, respectively, vs. 42.6% In this analysis on 1,772 men affected by prostate cancer (rest of the sample)) and most often high cancer-related (PCa) with a median follow-up of 4 years after radical pros- distress (35.8% and 58.1%, respectively, vs. 21.9% (rest tatectomy, most men self-identified as “someone who has of the sample)). While men who self-identified as “cancer had cancer” (46.8%) followed by “patient” (35.4%). Less conqueror” expressed the highest quality of life (QLQ-C30: than 20% of men perceived themselves as “cancer con- 81.0 ± 15.4), men who self-identified as “cancer survivor” queror” or “cancer survivor” and only a minority of men or “victim” expressed lowest quality of life (QLQ-C30: reported that “victim” would describe them best (1.8%). 69.1 ± 20.3 and QLQ-C30: 54.3 ± 18.6, respectively). High These results are in accordance with previous research on benefit finding was found most often in men self-identified men affected by PCa, which has shown that, while the major - as “cancer survivor” or “cancer conqueror” (68.9% and ity of these men identify themselves with neutral term such 65.3%, respectively, vs. 46.7% rest of the sample)) (all as “someone who has had cancer,” cancer–related self-per- p < 0.0001, Table 1, Table 2). ception with regard to one’s personal PCa experience may Multivariable logistic regression analyses showed an vary widely [8]. Moreover, compared to the results of our association between men who self-identified as “someone previous study on men affected by PCa with a very long fol- who has had cancer” and a younger age at survey (OR: low-up (median 15.6 years), no major differences in the dis - 0.98 [0.97–0.99]). Men who experienced a biochemical tribution of cancer-related self-perception can be observed. recurrence (OR: 1.91 [1.28–2.85]) or an ongoing therapy However, in this previous study, twice as many men (16.8%) at survey (OR: 2.59 [1.59–4.22]) were more likely to self- self-identified as “survivor” while self-identification with identify as “patient,” whereas men who did not experience “someone who has had cancer” and “patient” was somewhat biochemical recurrence were more likely to self-identify as lower, suggesting that the adaptation of a “survivor” identity “someone who has had cancer” (OR: 0.54 [0.36–0.81]). Men might develop with higher age and years after cancer diag- who were incontinent at survey were more likely to self- nosis and subsequent therapy. Additionally, by adding data identify as “cancer survivor” 1.99 [1.27–3.12]) and men who on functional outcome after radical prostatectomy as well were not sexually active in the 4 weeks prior to survey were as detailed psychological data, reflecting cancer-related dis- more likely to self-identify as “cancer conqueror” (OR: 1.83 tress and psychological adaptation, we were able to further [1.15–2.91]). No Incontinence at survey was associated with expand the understanding of cancer-related self-perception self-identification as “patient” (OR: 0.72 [0.54–0.96]) (all in men affected by PCa in this study. p < 0.05, Table 3). In men who self-identified as “someone who has had can- Whereas men who reported low cancer-related distress cer,” PCa was more often diagnosed in an organ confined were more likely to self-identify as “someone who has stage with fewer oncological risk factors. Consequently, had cancer” (OR: 0.69 [0.53–0.89]), men reporting high 1 3 Journal of Cancer Survivorship Table 1 Sociodemographic, n % clinical, and psychological characteristics of the study Cancer-related self-perception sample (n = 1772)  Patient 627 35.4  Victim 31 1.8  Someone who has had cancer 830 46.8  Cancer survivor 139 7.8  Cancer conqueror 145 8.2 Sociodemographic characteristics   Age at survey (years) M: 70.9 SD: 8.0  ≤ 60 182 10.3  > 60 to ≤ 70 568 32.0  70 1022 57.7 Partnership  Yes 1438 86.7  No 220 13.3 Children  0 294 19.2  ≥ 1 1237 80.8 Clinical characteristics Age at surgery (years) M: 65.8 SD: 7.7  ≤ 55 167 9.4  > 55 to ≤ 65 592 33.4  > 65 1013 57.2  Time since surgery (years) Mdn: 4 [2−8]   1–2 491 27.7   3–5 570 32.2   > 5 711 40.1  Second primary cancer   Yes 143 8.1   No 1629 91.9  Family history of PCa    Yes 495 27.9    No 1277 72.1  Family history of cancer (other than PCa)    Yes 796 44.9    No 976 55.1  PSA level at diagnosis (ng/ml) Mdn: 7.0 [5.1–10.6]   ≤ 4 178 10.1   > 4 to ≤ 10 1110 62.6   > 10 484 27.3  Gleason grade groups (1–5)   ISUP 1 255 14.3   ISUP 2 792 44.8   ISUP 3 447 25.3   ISUP 4 100 5.7   ISUP 5 176 9.9  Organ-confined stage at RP   Yes 1041 58.8   No 731 41.2  Biochemical recurrence   Yes (biochemical recurrence ongoing) 180 10.3   Yes (biochemical recurrence not ongoing) 211 12.1   No 1352 77.6  Ongoing treatment at survey    Yes 139 7.8    No 1633 92.2  Adjuvant therapy 1 3 Journal of Cancer Survivorship Table 1 (continued) n %   Radiotherapy (+ / − androgen deprivation therapy) 165 9.3   Androgen deprivation therapy 66 3.7   No 1541 87.0  RCS Charlson Score (at surgery)   0 1509 85.2   1 204 11.5   ≥ 2 59 3.3 Functional outcome  Continence   Yes 1309 75.5   No (continent prior to surgery) 426 24.6   No (not continent prior to surgery) 11 0.6  Overall sexual activity independent of partner   Yes 1090 70.5   No (sexual activity prior to surgery) 327 21.1   No (no sexual activity prior to surgery) 130 8.4  Masturbation (in the last 4 weeks)   Yes 871 55.3   No (masturbation prior to surgery) 108 6.9   No (no masturbation prior to surgery) 239 15.2   No (no presurgical information) 356 22.6  Partnered sexual activity (in the last 4 weeks)   Yes 638 42.6   No (partnered sexual activity prior to surgery) 512 34.2   No (no partnered sexual activity prior to surgery) 347 23.2 Psychosocial factors  PHQ-2 (depression screening)   Positive screening (≥ 3) 140 8.0   Negative screening (< 3) 1601 92.0  GAD-2 (anxiety disorder screening)   Positive screening (≥ 3) 130 7.5   Negative screening (< 3) 1595 92.5  Distress (QSC-R10) FBK10 Mdn: 7 [3−14]   High (> 14) 397 23.5   Low (≤ 14) 1291 76.5  Psychosocial counseling desired   Yes 410 23.8   No 1314 76.2  Quality of life EORTC QLQ-C30 M: 73.7 SD: 18.5  Perceived severity of disease   High 780 44.7   Low 965 55.3   Benefit finding   High 861 50.0   Low 861 50.0 M, mean; SD, standard deviation; Mdn, median; PCa, prostate cancer; PSA, prostate specific antigen; ISUP, The International Society of Urological Pathology; RP, radical prostatectomy; RCS, Royal College of Sur- geons; PHQ, patient health questionnaire; GAD, general anxiety disorder; QSC-R10, Questionnaire on Stress in Cancer Patients; EORTC QLQ, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire these men were more likely to have experienced no tumor to be affected by cancer-related distress. These results show recurrence after primary therapy and were less likely to that due to efficient early detection of PCa, enabling primary require adjuvant therapy. Further, these men reported a high therapy with excellent oncological and functional outcomes postoperative rate of continence (77.0%) and the highest rate possible, the personal PCa experience in many men does of postoperative sexual activity (76.6%), and were less likely not have the psychological demanding weight to trigger a 1 3 Journal of Cancer Survivorship Fig. 1 Self-identification in the study sample of men affected by prostate cancer with a median follow-up of 4 years deeper, more active cancer-related identity [26]. Qualitative survivors” [28]. The term originates from the commonly studies have revealed that these men perceive their cancer used terms “overall survival” or “recurrence free survival,” experience as something of the past [24]. Taken together, which describe the time length of survival after diagnosis this suggests that state of the art early detection and treat- in order to illustrate the aggressiveness of a certain kind of ment options enable PCa therapy that not only guarantees cancerous disease. Further, 3 or 5 years of recurrence free a long overall survival but also a minimal burden on the survival are often considered as time frames, which indicate physiological and psychological quality of life beyond can- that individuals affected by cancer might be considered as cer therapy. cured [28]. With growing research on cancer survivorship, One third of the men surveyed in this analysis self- the term “cancer survivor” has also been advocated as proper identified as “patient.” These men were more likely to have description of individuals affected by cancer regardless of experienced cancer recurrence or to receive an ongoing PCa disease course in order to emphasize resilience and per- therapy. For these men, PCa is a continuing reality rather sonal strength in one’s “fight” against cancer. In support of than an overcome life event. Therefore, it is not surprising such a mindset, public cancer survivorship movements have that these men were also more likely to report cancer-related become a part of especially North-American culture [8]. distress. However, this distress does not seem to be a con- However, research has shown that a large portion of indi- sequence of therapy side effects from primary therapy, as viduals affected by cancer does not identify as much with these men were also more likely to be continent at survey. the term, especially when lacking a socio-cultural support Further, most men who identified as patient did not report background, that has branded the term as something empow- high perceived disease severity and did not display a deficit ering [16, 28]. Additionally, men affected by PCa have stated in their quality of life compared to the age-matched men in previous studies that they did not experience PCa as such from the general German population [27]. This is in con- a threatening event to be reflected in the term “survivor”[4 , trast to previous studies that have suggested that continued 16, 21]. The data of this analysis reflects this. Identification self-identification as “(cancer) patient” after primary therapy with the term “survivor” was lower than in studies from the might be a sign of submission and passiveness, which might USA, showing that outside of the US identification with the lead to a reduced psychological well-being [10, 29]. Data term is less popular and might be interpreted differently [2 , of our analysis show that the term “patient” might rather 8]. Men who endorsed the term “survivor” were more likely be favored as neutral description of an ongoing interaction to have a high perceived disease severity and reported more with a medical condition and its required treatment phases. often fundamental life changes (benefit finding) due to their Such a way of self-perception might be especially common cancer experience reflecting the idea that in order to feel in cultures with clear and direct social traits such as Ger- like a “survivor,” one has to overcome a life event with a many and therefore explain the difference between our data certain gravity. Moreover, these men were more likely to and data from the USA. be incontinent at survey. Incontinence is one of the most In most scientific literature, individuals affected by cancer psychological demanding side effects of radical prostatec- after primary therapy are in general referred to as “cancer tomy and may have a great impact on the quality of life [3, 1 3 Journal of Cancer Survivorship Table 2 Comparison of key characteristics of the 5 cancer-related identities Someone who Patient Cancer conqueror Cancer survivor Victim has had cancer n = 627 (%) n = 145 (%) n = 139 (%) n = 31 (%) n = 830 (%) Age at survey (years) p = .0008   ≤ 60 13.0 8.6 6.9 5.8 6.5   > 60 to ≤ 70 35.1 28.7 32.4 30.2 25.8    > 70 51.9 62.7 60.7 64.0 67.7 Partnership p = .44   Yes 85.8 86.4 91.3 88.2 90.3   No 14.2 13.6 8.7 11.8 9.7 Children p = .22   ≥ 1 80.7 79.7 78.0 88.4 84.0   0 19.3 20.3 22.0 11.6 16.0 Age at surgery (years) p < .0001   ≤ 55 11.5 8.8 8.3 2.2 6.5   > 55 to ≤ 65 37.7 27.6 32.4 36.7 25.8   > 65 50.8 63.6 59.3 61.1 67.7 Time since surgery (years) p = .12   1–2 29.8 27.9 22.1 18.7 35.5   3–5 31.5 33.0 34.5 31.7 25.8   > 5 38.7 39.1 43.4 49.6 38.7 Second primary cancer p = .93   Yes 8.7 7.5 7.6 7.9 6.5   No 91.3 92.5 92.4 92.1 93.5 Family history of PCa p = .43   Yes 28.4 27.6 29.7 28.1 12.9   No 71.6 72.4 70.3 71.9 87.1 Family history of cancer (other than PCa) p = .056   Yes 46.8 42.4 46.2 39.6 64.5   No 53.2 57.6 53.8 60.4 35.5 PSA Lever at diagnosis (ng/ml) p = .006   ≤ 4 11.9 8.3 8.3 9.4 6.5   > 4 ≤ 10 65.3 61.6 56.5 57.5 64.5   > 10 22.8 30.1 35.2 33.1 29.0 Gleason grade group (1–5) p < .0001   ISUP 1 17.7 11.7 14.5 10.1 0.0   ISUP 2 48.7 42.3 40.0 40.3 29.0   ISUP 3 22.6 27.8 29.0 21.6 45.2   ISUP 4 4.1 6.1 9.7 8.6 6.5   ISUP 5 6.9 12.1 6.9 19.4 19.4 Organ-confined stage at RP p < .0001   Yes 65.7 54.6 57.9 41.0 41.9   No 34.3 45.5 42.1 59.0 58.1 Biochemical recurrence p < .0001   Yes (progress not ongoing) 9.0 15.5 15.4 10.1 20.7   Yes (progress ongoing) 6.0 14.9 7.0 18.1 17.2   No 85.0 69.8 77.6 71.7 62.1 Ongoing treatment at survey p < .0001   Yes 3.1 13.6 2.1 13.7 19.4   No 96.9 86.4 97.9 86.3 80.7 Adjuvant therapy p < .0001   Radiotherapy 6.6 9.7 12.4 18.0 19.4   Androgen deprivation therapy 2.2 5.3 4.1 5.8 3.2   No 91.2 85.0 83.5 76.2 77.4 1 3 Journal of Cancer Survivorship Table 2 (continued) Someone who Patient Cancer conqueror Cancer survivor Victim has had cancer n = 627 (%) n = 145 (%) n = 139 (%) n = 31 (%) n = 830 (%) RCS Charlson Score (at surgery) p = .015   0 88.0 83.6 82.1 79.8 77.4   1 10.1 12.0 11.0 17.3 16.2   ≥ 2 1.9 4.4 6.9 2.9 6.4 Urinary continence p < .0001   Yes 77.0 77.5 78.2 62.0 40.0   No (continent prior to surgery) 23.0 22.5 21.8 38.0 60.0 Sexual activity independent of partner p = .0002   Yes 76.6 65.7 64.1 61.5 59.3   No (sexual activity prior to surgery) 17.1 24.1 27.5 25.7 26.0   No (no sexual activity prior to surgery) 6.3 10.2 8.4 12.9 14.8 Masturbation p < .0001   Yes 63.6 49.4 50.4 41.7 32.1   No (masturbation prior to surgery) 6.4 7.3 8.5 5.8 7.1   No (no masturbation prior to surgery) 12.4 16.6 16.3 22.5 25.0   No 17.6 26.7 24.8 30.0 35.7 Partnered sexual activity p = .042   Yes 46.5 40.5 38.9 34.3 30.8   No (partnered sexual activity prior to surgery) 33.5 34.6 36.5 32.4 42.3   No (no partnered sexual activity prior) 20.0 25.0 24.6 33.3 26.9 PHQ-2 (depression screening) p < .0001   Positive screening (≥ 3) 6.4 8.9 5.6 12.7 27.6   Negative screening (< 3) 93.6 91.1 94.4 87.3 72.4 GAD-2 (anxiety disorder screening) p < .0001   Positive screening (≥ 3) 6.1 7.3 4.9 15.3 29.0   Negative screening (< 3) 93.9 92.7 95.1 84.7 71.0 Quality of life QLQ-C30 p < .0001 MW: 74.7 SD:17.7 MW: 72.7 MW: 81.0 SD:15.4 MW: 69.1 SD:20.3 MW: 54.3 SD:18.9 SD:18.6 Distress (QSC-R10) FBK10 p < .0001   High (> 14) 19.4 26.4 14.7 35.8 58.1   Low (≤ 14) 80.6 73.6 85.3 64.2 41.9 Psychosocial counseling desired* p = .018   Yes 21.6 26.3 17.5 29.9 34.5   No 78.4 73.7 82.5 70.1 65.5 Perceived severity of disease p < .0001   High 42.0 42.9 42.7 61.5 90.3   Low 58.0 57.1 57.3 38.5 9.7 Benefit finding p < .0001   High 48.1 44.7 65.3 68.9 51.6   Low 51.9 55.3 34.7 31.1 48.4 PCa, prostate cancer; PSA, prostate specific antigen; ISUP, The International Society of Urological Pathology; RP, radical prostatectomy; RCS, Royal College of Surgeons; PHQ, patient health questionnaire; GAD, general anxiety disorder; QSC-R10, Questionnaire on Stress in Cancer Patients; EORTC QLQ, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire 15]. Taken together, this illustrates that in this analysis men Research on how to incorporate a cancer experience in affected by PCa did not identify with the term “survivor” in one’s identity has shown that some individuals choose to order to reflect a cured disease state or to actively embrace embrace actively engaging with their disease as part of their their personal achievements in the fight against their disease identity and that these individuals might benefit from such but in order to express being burdened by the therapy and approach with better psychological well-being as well as its long-term consequences. In such a context, men affected disease coping [10, 19]. In the survivorship movements in by PCa may consider themselves as wounded “survivor” of the USA, an identification as a “cancer survivor” has been PCa and radical prostatectomy. promoted as an exemplification of such active approach. But 1 3 Journal of Cancer Survivorship Table 3 Factors associated with cancer-related identities in multiple logistic regression analysis with backward elimination Someone who has Patient Cancer conqueror Cancer survivor had cancer OR [95% CI] OR [95% CI] OR [95% CI] OR [95% CI] Age at survey (years) [continues] 0.98 [0.97–0.99] Ongoing treatment at survey [ref: no]   Yes 0.43 [0.25–0.74] 2.59 [1.59–4.22] 0.22 [0.05–0.93] Biochemical recurrence [ref: no]   Yes (progress not ongoing) 0.66 [0.47–0.94] 1.57 [1.10–2.23]   Yes (progress ongoing) 0.54 [0.36–0.81] 1.91 [1.28–2.85] Continence [ref: yes]   No (continent prior to surgery) 0.72 [0.54–0.96] 1.99 [1.27–3.12] Sexual activity independent of partner [ref: yes]   No (sexual activity prior to surgery) 1.83 [1.15–2.91]   No (no sexual activity prior to surgery) 1.36 [0.65–2.85] Quality of life QLQ-C30 [continues] 1.38 [1.21–1.58] Distress (QSC-R10) FBK10 [ref: low (≤ 14)]   High (> 14) 0.69 [0.53–0.89] 1.41 [1.07–1.86] Perceived severity of disease [ref: low]   High 2.07 [1.33–3.24] Benefit finding [ref: low]   High 0.66 [0.52–0.83] 1.89 [1.27–2.81] 2.05 [1.30–3.23] PCa, prostate cancer; PHQ, patient health questionnaire; FU, follow-up; ref, reference; OR, odds ratio; CI, confidence interval; sec., secondary as being mentioned above without the proper context, the suggests that these men were more likely to be burdened term might not feel as suitable to individuals affected by with incontinence, high perceived disease severity, and cancer that want to incorporate an active overcoming of their anxiety, indicating the need for further psycho-oncological disease within their identity. In this survey, men were given support. the option to choose the more exaggerated term “cancer The findings of this analysis have to be considered within conqueror” to express such an outlook on their PCa experi- certain limitations. Due to the cross-sectional design, causal ence. Men who chose “cancer conqueror” as self-description assumptions on development of certain aspects of self-percep- were less likely to report cancer-related distress or an ongo- tion after radical prostatectomy should be further investigated ing therapy and were more likely to report higher quality in longitudinal studies. It is unclear whether certain psycho- of life as well as high benefit finding. These results sug- logical conditions after being affected by cancer might trigger gest that a rather confident and active way of cancer-related identification with a certain cancer-related self-perception or self-perception in men affected by PCa might be a sign of whether actively embracing an empowering cancer-related a good psychological adaptation and that these men should identity might lead to increased psychological resilience and be encouraged in embracing such an empowering approach. comfort. By only including men, who were primarily treated Another explanation for these results might be that a so far with radical prostatectomy, generalization towards all men indistinct moderator such as an optimistic and extroverted affected by PCa is limited, and implications for other cancer personality might give rise to a rather confident and active types must be treated with caution. However, radical prosta- way of self-description as well as lower distress and higher tectomy, which leads to sudden and potentially permanent psychological well-being. changes in the lives of affected men, is the most common form Only a minority of men in this analysis self-identified of primary therapy for men with localized PCa. Therefore, with the term “victim,” which stresses the seemingly piti- our data on a large sample of nearly 1800 men represents a ful fate and demanding therapy side effects of individuals substantial portion of men ae ff cted by PCa, who often require diagnosed with and treated for cancer. Most studies on the continued medical assistance after primary therapy. All infor- subject have found that self-perception as a “cancer victim” mation on the functional outcome after radical prostatectomy is associated with psychological distress [8]. Interpretation are patient reported and therefore do not equal a clinical diag- of the data on men that self-identify as “victims” are limited nosis. Nevertheless, assessment prior and post-surgery vali- as they only make up a small portion. Nevertheless, our data dates their clinical strength. Men were prompted to choose 1 3 Journal of Cancer Survivorship as you give appropriate credit to the original author(s) and the source, one of 5 terms that described them best with regard to their provide a link to the Creative Commons licence, and indicate if changes PCa experience. By applying forced choice, our data might were made. The images or other third party material in this article are represent self-perception after radical prostatectomy for PCa included in the article’s Creative Commons licence, unless indicated somewhat one-dimensionally. However, the different ways otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not of self-perception were uniquely associated with distinctive permitted by statutory regulation or exceeds the permitted use, you will clinical and psychological factors implying clinical relevant need to obtain permission directly from the copyright holder. To view a variance in the measured self-perception. copy of this licence, visit http://cr eativ ecommons. or g/licen ses/ b y/4.0/ . 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 References such as “someone who has had cancer,” and it seems appro- priate to address these men in such a way. Nevertheless, 1. Avery K, Donovan J, Peters TJ, Shaw C, Gotoh M, Abrams P. 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Noninvasive outcome meas- ures of urinary incontinence and lower urinary tract symptoms: Consent to participate Informed consent was obtained from all indi- a multicenter study of micturition diary and pad tests. J Urol. vidual participants included in the study. 2000;164:698–701. 14. Jahnen M, Mynzak E, Meissner VH, Schiele S, Schulwitz H, Ankerst DP, Gschwend JE, Herkommer K, Dinkel A. Diversity Conflict of Interest The authors declare no competing interests. of cancer-related identities in long-term prostate cancer survivors after radical prostatectomy. BMC Cancer. 2021;21:1041. Open Access This article is licensed under a Creative Commons Attri- 15 Johansson E, Steineck G, Holmberg L, Johansson JE, Nyberg T, bution 4.0 International License, which permits use, sharing, adapta- Ruutu M, Bill-Axelson A, Investigators S-. 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J Cancer Surviv. 2014;8:427–36. jurisdictional claims in published maps and institutional affiliations. 24 Park CL, Zlateva I, Blank TO. Self-identity after cancer: “survi- vor”, “victim”, “patient”, and “person with cancer.” J Gen Intern Med. 2009;24(Suppl 2):S430-435. 1 3 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Cancer Survivorship: Research and Practice Springer Journals

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Springer Journals
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Copyright © The Author(s) 2022
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1932-2259
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1932-2267
DOI
10.1007/s11764-022-01256-2
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Abstract

Purpose To identify factors associated with cancer-related self-perception after being affected by prostate cancer (PCa) and radical prostatectomy. Subjects and methods Men affected by PCa and radical prostatectomy were asked to choose one of 5 cancer-related identities (“patient,” “victim,” “someone who has had cancer,” “cancer survivor,” and “cancer conqueror”). Associations with clinical data, functional outcome (continence and sexual activity), and psychological factors were assessed. Results One thousand seven hundred seventy-two men were included. Most men perceived themselves as “someone who has had cancer” (46.8%) which was associated with no cancer recurrence (OR: 0.54 [0.36–0.81]) and low cancer-related distress (OR: 0.69 [0.53–0.89]) or “patient” (35.4%) which was associated with ongoing therapy (OR: 2.59 [1.59–4.22]) and biochemical disease recurrence (OR: 1.91 [1.28–2.85]). Self-perception, as “cancer survivor” (7.8%), “cancer conqueror” (8.2%), or “victim” (1.8%), was less common. “Cancer survivor” was associated with high perceived disease severity (OR: 2.07 [1.33–3.24]) and incontinence (1.99 [1.27–3.12]). “Cancer survivor” and “cancer conqueror” were related to high benefit finding (OR: 2.05 [1.30–3.23], OR: 1.89 [1.27–2.81], respectively); only “cancer conqueror” was associated with higher quality of life (OR: 1.38 [1.21–1.58]). Conclusions Self-perception in men affected by PCa can vary widely and is associated with distinct characteristics that reflect the experienced severity of the disease, therapy side effects, and psychological well-being. Implications for Cancer Survivors The assessment of cancer-related self-perception can give important insights when evaluat- ing men affected by PCa who need assistance in coping with their disease. Keywords Prostate cancer · Cancer-related identity · Self-perception · Cancer survivors · Survivorship · Radical prostatectomy Background can be treated successfully, guaranteeing long-term survival [9]. However, living with a history of PCa beyond primary With an aging population along with improvements in early therapy is in many cases still accompanied by a wide range detection, there are approximately 450,000 men diagnosed of hardships deriving from factors such as distrust in one’s with prostate cancer (PCa) in Europe annually [12]. In most body and therapy side effects, most significantly incontinence men, PCa is diagnosed in an early, symptomless stage and and erectile dysfunction [7, 25]. Further, an ongoing cancer follow-up may cause lingering existential fears of a tumor progression leading to a symptomatic metastasized disease * Matthias Jahnen [21]. Taken together, this has placed growing importance Matthias.jahnen@tum.de on advising men affected by PCa on how to process their Department of Urology, Klinikum rechts der Isar, School cancer experience and how to integrate it into their personal of Medicine, Technical University of Munich, Ismaninger self-perception. Str. 22, 81675 Munich, Germany In this regard, it has been proposed that the adaptation Department of Psychosomatic Medicine and Psychotherapy, of an active cancer-related identity, which accentuates Klinikum rechts der Isar, School of Medicine, Technical overcoming the disease, might help coping with cancer and University of Munich, Langerstr.3, 81675 Munich, Germany Vol.:(0123456789) 1 3 Journal of Cancer Survivorship its therapy side effects [10, 24]. Particularly in the USA, side effects, and specific cancer-related distress has so far not the concept of survivorship and identification as a “cancer been investigated. survivor” has been advocated for individuals affected by This study addresses these remaining issues regarding cancer in order to encourage such a way of self-perception cancer-related self-perception in men affected by PCa by [8, 19]. Furthermore, it has been proposed to abandon analyzing a large sample of German men 1 to 12 years after terminology such as “patient” or “cancer victim,” which radical prostatectomy. First, it was assessed how these men connotate a more passive stance and are regarded as contrary self-identify with the following 5 cancer-related identities: towards developing a positive self-perception when being “patient,” “victim,” “someone who has had cancer,” “cancer affected by cancer [2 , 10, 20]. survivor,” and “cancer conqueror.” Second, differences in In several studies on individuals affected by diverse detailed clinical data, functional outcome (continence and types of cancer, self-identification as “cancer survivor” sexual activity), and psychological characteristic, reflect- has been associated with more active disease coping, ing the subjective cancer experience and its psychological higher participation in cancer-related activities, and better impact, between each cancer-related self-perception were psychological well-being[2, 8]. However, subsequent examined. Lastly, 5 separate multivariable models were cal- research has revealed that the majority of individuals affected culated to identify independent associations between cancer- by cancer rather identify with more neutral terms such as related self-perception and the analyzed factors, in order to “someone who has had cancer” without a major drawback demonstrate that differences in self-perception after radical in overall well-being [8]. Regarding men affected by PCa, prostatectomy may have clinically significant implications small US studies showed that a third of men affected by PCa for men affected by PCa. favor terms such as “cancer survivor” or “cancer conqueror” as self-description [2, 23]. In these studies, identification as a “survivor” was associated with positive affect, and it Subjects and methods has been suggested that adoption of a “survivor” identity might be associated with lower threat appraisal, thoughtful Study sample reflection, and gaining an understanding through peers [ 2, 23, 24]. This research implies that despite the in general Since 2006, men treated for PCa with radical prostatectomy good long-term survival prognosis, cancer-related self- at the Department of Urology of the Klinikum rechts der Isar, perception might influence psychological adaptation and Technical University of Munich, are asked prior to surgery overall well-being in men affected by PCa. In a recent study to participate in psycho-oncological research projects on men affected by PCa of a Germany wide research project and the hospitals PCa register, containing standardized with a median follow up of more than 15 years, we were sociodemographic, clinical, and functional data of all treated already able to show that differences in cancer-related self- PCa patients. These men are contacted annually via mail perception are measurable even years after primary therapy to complete ongoing questionnaires concerning current and that different cancer-related identities are associated clinical, functional, sociodemographic, and psychosocial with specific psychological factors. Further, we were able information. Further clinical and pre-surgical information for to show that some clinical factors such as cancer recurrence this analysis was obtained through the clinics PCa register. and ongoing therapy were associated with cancer-related All participants gave their written consent to participate. The self-perception, but that also the subjective experienced ethics committee of the Technical University of Munich has severity of the disease remained an independent major factor approved this research project. associated with a certain cancer-related self-perception. We For this cross-sectional analysis, men were contacted via found a positive association between high perceived disease mail between November 2019 and October 2020. Men who severity and self-identification as “survivor” or “victim” as underwent primary radical prostatectomy (without neoad- well as an association between low perceived disease severity juvant therapy) between one and 12 years prior to survey and self-identification with the less loaded term “someone and who answered the item regarding cancer-related identity who has had cancer”[14]. The subjective disease burden is were included (n = 1772). often not only a reflection of the disease itself but of the consequences and side effects from the necessary therapy. Radical prostatectomy is often associated with therapy side Measures effects such as incontinence and erectile dysfunction which influence men affected by PCa physically and psychologically Cancer‑related self‑perception especially in the first few years after radical prostatectomy. However, in which way, the development of a particular form Participants were asked to choose one of the following terms of cancer-related self-perception is associated with therapy that would describe them most suitable with regards to their 1 3 Journal of Cancer Survivorship cancer experience [2, 8, 10]: “patient,” “victim,” “someone asked to answer on a six-point scale ranging from “applies who has had cancer,” “cancer survivor,” and “cancer and hardly distresses me” [1] to “applies and distresses me conqueror.” severely” [5] (not applicable [0]). A sum score > 14 was used as an indicator for high distress. Following the QSC-R10, Sociodemographic and clinical characteristics all men were asked whether they desire psychosocial coun- seling [5]. The following sociodemographic data were included in this analysis: age at survey, current partnership, and children. Global health status/quality of life Clinical data included were age at surgery, time since surgery, presence of a second primary cancer, family history Quality of life was assessed using the last 2 items of the of PCa (yes: at least one consanguine relative with PCa vs European Organization for Research and Treatment of no), family history of cancer (other than PCa), PSA level at Cancer questionnaire (EORTC QLQ-C30). These two items diagnosis, histopathological Gleason grade group, organ- capture the overall health and quality of life in the past week. confined stage at RP according to TNM classification of Participants were asked to answer on a seven-point Likert 2002, biochemical recurrence (PSA level ≥ 0.2  ng/ml) scale ranging from “very poor” [1] to “excellent” [7]. Based during follow-up (at any time during follow-up vs ongoing on the standardized EORTC formula, the mean value of the at survey vs no), ongoing PCa treatment at survey, adjuvant two items was calculated to a score, ranging from 0 to 100. therapy (radiotherapy (+ / − androgen deprivation therapy) Higher scores indicate a higher quality of life [11]. vs androgen deprivation therapy vs no), and Royal College of Surgeons Charlson comorbidity index before surgery [6]. Perceived severity of the disease Functional outcome The perceived severity of being affected by PCa was assessed with the single item “Having had prostate cancer The following data on sexual and bladder function were is one of the worst things that happened to me in my life” assessed prior to surgery and post-surgery (at survey): (adapted from [30]). Participants were asked to answer on urinary continence (urinary continence was defined prior to a four-point Likert scale ranging from “strongly disagree” surgery in accordance to the International Consultation on [1] to “strongly agree” [4]. Responses (1) and (2) as well Incontinence Questionnaire Short-Form (ICIQ-SF). A sum as responses [3] and [4] were combined to “low perceived score > 5 was considered as incontinence [1]. Incontinence severity” and “high perceived severity,” respectively. post-surgery was defined in accordance with the 24-h pad test. The reporting of ≥ 1 wet pad within 24 h was considered Benefit finding as incontinence [13]); masturbation (in the last 4 weeks); and partnered sexual activity (any form of sexual activity Benefit finding was assessed using one item with high fac- performed with a partner) (in the last 4 weeks). Masturbation tor loading and high face validity adapted from the German and partnered sexual activity were further combined into version of the 17-item benefit finding scale: “My prostate a single variable (sexual activity independent of partner) cancer has helped me become more focused on priorities, in order to represent any form of sexual activity in the last with a deeper sense of purpose in life” [22]. Participants 4 weeks. were asked to answer on a five-point Likert scale ranging from “not at all” [1] to “extremely” [5]. Responses [1] and Depression and anxiety [2] as well as [3] to [5] were combined to “low benefit find- ing” and “high benefit finding,” respectively. Symptoms of depression and anxiety were assessed using the validated ultra-brief instruments Patient Health Ques- Statistical analysis tionnaire-2 (PHQ-2) and General Anxiety Disorder-2 (GAD- 2) scale. For both scales (range 0–6), a cut-off score ≥ 3 Descriptive statistics were calculated for all study variables. indicates a positive screening of depression or anxiety, Chi-square and Wilcoxon tests were applied for analyzing respectively [17, 18]. differences in cancer-related self-perception with regard to sociodemographic, clinical, and psychological variables. Distress and psychosocial counseling To identify variables independently associated with each of the 4 different ways of cancer-related self-perception Distress was assessed with the short form of the question- multivariable logistic regression with backward elimination naire on distress in cancer patients (QSC-R10) using 10 was used. Significance was set at p < 0.05. All analyses were items that capture cancer specific stressors. Participants were performed using SAS (Version 9.4). 1 3 Journal of Cancer Survivorship cancer-related distress were more likely to self-identify as Results “patient” (OR: 1.41 [1.07–1.86]). High benefit finding was associated with self-identification as “cancer conqueror” or One thousand seven hundred seventy-two men affected by “cancer survivor” finding (OR: 2.05 [1.30–3.23], OR: 1.89 PCa and primarily treated with radical prostatectomy with [1.27–2.81], respectively), and higher quality of life was a mean age of 70.9 years at survey (standard deviation associated with self-identification as “cancer conqueror” (OR: (SD) = 8.0) and a median follow-up of 4 years (first and 1.38 [1.21–1.58]). High perceived severity of the disease was 3rd quartile = 2–8) were included in the analysis (Table 1). associated with self-identification as “cancer survivor” (OR: Men self-identified most frequently as “someone who has 2.07 [1.33–3.24]) (Table 3) (all p < 0.05). Due to the small had cancer” (46.8%) followed by “patient” (35.4%). The sample size (n = 31), no multivariable logistic regression terms “cancer conqueror” and “cancer survivor” were model was calculated for men identifying as “victim.” favored by 8.2% and 7.8%, respectively. The least endorsed term was “victim” (1.8%) (Fig. 1). Men who self-identified as “someone who has Discussion had cancer” were the youngest at surgery, most often sexually active (76.6% vs. 64.1% (rest of the sample)) Life expectancy after diagnosis and treatment for PCa is high and had the lowest percentage of biochemical recurrence due to early detection and effective treatment options [12]. during follow-up (15.0% vs. 28.8% (rest of the sample)). Nevertheless, the psychological weight of a cancer diagno- Incontinence at survey was most often reported by men who sis, fear of disease progression, and treatment side effects self-identified as “cancer survivor” or “victim” (38.0% and are a psychological burden for many men affected by PCa 60.0%, respectively, vs 23.2% (rest of the sample)). These [7]. Therefore, it is important to learn more about the psy- men reported also most often high perceived severity chological adaptation of these men. of disease (61.5% and 90.3%, respectively, vs. 42.6% In this analysis on 1,772 men affected by prostate cancer (rest of the sample)) and most often high cancer-related (PCa) with a median follow-up of 4 years after radical pros- distress (35.8% and 58.1%, respectively, vs. 21.9% (rest tatectomy, most men self-identified as “someone who has of the sample)). While men who self-identified as “cancer had cancer” (46.8%) followed by “patient” (35.4%). Less conqueror” expressed the highest quality of life (QLQ-C30: than 20% of men perceived themselves as “cancer con- 81.0 ± 15.4), men who self-identified as “cancer survivor” queror” or “cancer survivor” and only a minority of men or “victim” expressed lowest quality of life (QLQ-C30: reported that “victim” would describe them best (1.8%). 69.1 ± 20.3 and QLQ-C30: 54.3 ± 18.6, respectively). High These results are in accordance with previous research on benefit finding was found most often in men self-identified men affected by PCa, which has shown that, while the major - as “cancer survivor” or “cancer conqueror” (68.9% and ity of these men identify themselves with neutral term such 65.3%, respectively, vs. 46.7% rest of the sample)) (all as “someone who has had cancer,” cancer–related self-per- p < 0.0001, Table 1, Table 2). ception with regard to one’s personal PCa experience may Multivariable logistic regression analyses showed an vary widely [8]. Moreover, compared to the results of our association between men who self-identified as “someone previous study on men affected by PCa with a very long fol- who has had cancer” and a younger age at survey (OR: low-up (median 15.6 years), no major differences in the dis - 0.98 [0.97–0.99]). Men who experienced a biochemical tribution of cancer-related self-perception can be observed. recurrence (OR: 1.91 [1.28–2.85]) or an ongoing therapy However, in this previous study, twice as many men (16.8%) at survey (OR: 2.59 [1.59–4.22]) were more likely to self- self-identified as “survivor” while self-identification with identify as “patient,” whereas men who did not experience “someone who has had cancer” and “patient” was somewhat biochemical recurrence were more likely to self-identify as lower, suggesting that the adaptation of a “survivor” identity “someone who has had cancer” (OR: 0.54 [0.36–0.81]). Men might develop with higher age and years after cancer diag- who were incontinent at survey were more likely to self- nosis and subsequent therapy. Additionally, by adding data identify as “cancer survivor” 1.99 [1.27–3.12]) and men who on functional outcome after radical prostatectomy as well were not sexually active in the 4 weeks prior to survey were as detailed psychological data, reflecting cancer-related dis- more likely to self-identify as “cancer conqueror” (OR: 1.83 tress and psychological adaptation, we were able to further [1.15–2.91]). No Incontinence at survey was associated with expand the understanding of cancer-related self-perception self-identification as “patient” (OR: 0.72 [0.54–0.96]) (all in men affected by PCa in this study. p < 0.05, Table 3). In men who self-identified as “someone who has had can- Whereas men who reported low cancer-related distress cer,” PCa was more often diagnosed in an organ confined were more likely to self-identify as “someone who has stage with fewer oncological risk factors. Consequently, had cancer” (OR: 0.69 [0.53–0.89]), men reporting high 1 3 Journal of Cancer Survivorship Table 1 Sociodemographic, n % clinical, and psychological characteristics of the study Cancer-related self-perception sample (n = 1772)  Patient 627 35.4  Victim 31 1.8  Someone who has had cancer 830 46.8  Cancer survivor 139 7.8  Cancer conqueror 145 8.2 Sociodemographic characteristics   Age at survey (years) M: 70.9 SD: 8.0  ≤ 60 182 10.3  > 60 to ≤ 70 568 32.0  70 1022 57.7 Partnership  Yes 1438 86.7  No 220 13.3 Children  0 294 19.2  ≥ 1 1237 80.8 Clinical characteristics Age at surgery (years) M: 65.8 SD: 7.7  ≤ 55 167 9.4  > 55 to ≤ 65 592 33.4  > 65 1013 57.2  Time since surgery (years) Mdn: 4 [2−8]   1–2 491 27.7   3–5 570 32.2   > 5 711 40.1  Second primary cancer   Yes 143 8.1   No 1629 91.9  Family history of PCa    Yes 495 27.9    No 1277 72.1  Family history of cancer (other than PCa)    Yes 796 44.9    No 976 55.1  PSA level at diagnosis (ng/ml) Mdn: 7.0 [5.1–10.6]   ≤ 4 178 10.1   > 4 to ≤ 10 1110 62.6   > 10 484 27.3  Gleason grade groups (1–5)   ISUP 1 255 14.3   ISUP 2 792 44.8   ISUP 3 447 25.3   ISUP 4 100 5.7   ISUP 5 176 9.9  Organ-confined stage at RP   Yes 1041 58.8   No 731 41.2  Biochemical recurrence   Yes (biochemical recurrence ongoing) 180 10.3   Yes (biochemical recurrence not ongoing) 211 12.1   No 1352 77.6  Ongoing treatment at survey    Yes 139 7.8    No 1633 92.2  Adjuvant therapy 1 3 Journal of Cancer Survivorship Table 1 (continued) n %   Radiotherapy (+ / − androgen deprivation therapy) 165 9.3   Androgen deprivation therapy 66 3.7   No 1541 87.0  RCS Charlson Score (at surgery)   0 1509 85.2   1 204 11.5   ≥ 2 59 3.3 Functional outcome  Continence   Yes 1309 75.5   No (continent prior to surgery) 426 24.6   No (not continent prior to surgery) 11 0.6  Overall sexual activity independent of partner   Yes 1090 70.5   No (sexual activity prior to surgery) 327 21.1   No (no sexual activity prior to surgery) 130 8.4  Masturbation (in the last 4 weeks)   Yes 871 55.3   No (masturbation prior to surgery) 108 6.9   No (no masturbation prior to surgery) 239 15.2   No (no presurgical information) 356 22.6  Partnered sexual activity (in the last 4 weeks)   Yes 638 42.6   No (partnered sexual activity prior to surgery) 512 34.2   No (no partnered sexual activity prior to surgery) 347 23.2 Psychosocial factors  PHQ-2 (depression screening)   Positive screening (≥ 3) 140 8.0   Negative screening (< 3) 1601 92.0  GAD-2 (anxiety disorder screening)   Positive screening (≥ 3) 130 7.5   Negative screening (< 3) 1595 92.5  Distress (QSC-R10) FBK10 Mdn: 7 [3−14]   High (> 14) 397 23.5   Low (≤ 14) 1291 76.5  Psychosocial counseling desired   Yes 410 23.8   No 1314 76.2  Quality of life EORTC QLQ-C30 M: 73.7 SD: 18.5  Perceived severity of disease   High 780 44.7   Low 965 55.3   Benefit finding   High 861 50.0   Low 861 50.0 M, mean; SD, standard deviation; Mdn, median; PCa, prostate cancer; PSA, prostate specific antigen; ISUP, The International Society of Urological Pathology; RP, radical prostatectomy; RCS, Royal College of Sur- geons; PHQ, patient health questionnaire; GAD, general anxiety disorder; QSC-R10, Questionnaire on Stress in Cancer Patients; EORTC QLQ, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire these men were more likely to have experienced no tumor to be affected by cancer-related distress. These results show recurrence after primary therapy and were less likely to that due to efficient early detection of PCa, enabling primary require adjuvant therapy. Further, these men reported a high therapy with excellent oncological and functional outcomes postoperative rate of continence (77.0%) and the highest rate possible, the personal PCa experience in many men does of postoperative sexual activity (76.6%), and were less likely not have the psychological demanding weight to trigger a 1 3 Journal of Cancer Survivorship Fig. 1 Self-identification in the study sample of men affected by prostate cancer with a median follow-up of 4 years deeper, more active cancer-related identity [26]. Qualitative survivors” [28]. The term originates from the commonly studies have revealed that these men perceive their cancer used terms “overall survival” or “recurrence free survival,” experience as something of the past [24]. Taken together, which describe the time length of survival after diagnosis this suggests that state of the art early detection and treat- in order to illustrate the aggressiveness of a certain kind of ment options enable PCa therapy that not only guarantees cancerous disease. Further, 3 or 5 years of recurrence free a long overall survival but also a minimal burden on the survival are often considered as time frames, which indicate physiological and psychological quality of life beyond can- that individuals affected by cancer might be considered as cer therapy. cured [28]. With growing research on cancer survivorship, One third of the men surveyed in this analysis self- the term “cancer survivor” has also been advocated as proper identified as “patient.” These men were more likely to have description of individuals affected by cancer regardless of experienced cancer recurrence or to receive an ongoing PCa disease course in order to emphasize resilience and per- therapy. For these men, PCa is a continuing reality rather sonal strength in one’s “fight” against cancer. In support of than an overcome life event. Therefore, it is not surprising such a mindset, public cancer survivorship movements have that these men were also more likely to report cancer-related become a part of especially North-American culture [8]. distress. However, this distress does not seem to be a con- However, research has shown that a large portion of indi- sequence of therapy side effects from primary therapy, as viduals affected by cancer does not identify as much with these men were also more likely to be continent at survey. the term, especially when lacking a socio-cultural support Further, most men who identified as patient did not report background, that has branded the term as something empow- high perceived disease severity and did not display a deficit ering [16, 28]. Additionally, men affected by PCa have stated in their quality of life compared to the age-matched men in previous studies that they did not experience PCa as such from the general German population [27]. This is in con- a threatening event to be reflected in the term “survivor”[4 , trast to previous studies that have suggested that continued 16, 21]. The data of this analysis reflects this. Identification self-identification as “(cancer) patient” after primary therapy with the term “survivor” was lower than in studies from the might be a sign of submission and passiveness, which might USA, showing that outside of the US identification with the lead to a reduced psychological well-being [10, 29]. Data term is less popular and might be interpreted differently [2 , of our analysis show that the term “patient” might rather 8]. Men who endorsed the term “survivor” were more likely be favored as neutral description of an ongoing interaction to have a high perceived disease severity and reported more with a medical condition and its required treatment phases. often fundamental life changes (benefit finding) due to their Such a way of self-perception might be especially common cancer experience reflecting the idea that in order to feel in cultures with clear and direct social traits such as Ger- like a “survivor,” one has to overcome a life event with a many and therefore explain the difference between our data certain gravity. Moreover, these men were more likely to and data from the USA. be incontinent at survey. Incontinence is one of the most In most scientific literature, individuals affected by cancer psychological demanding side effects of radical prostatec- after primary therapy are in general referred to as “cancer tomy and may have a great impact on the quality of life [3, 1 3 Journal of Cancer Survivorship Table 2 Comparison of key characteristics of the 5 cancer-related identities Someone who Patient Cancer conqueror Cancer survivor Victim has had cancer n = 627 (%) n = 145 (%) n = 139 (%) n = 31 (%) n = 830 (%) Age at survey (years) p = .0008   ≤ 60 13.0 8.6 6.9 5.8 6.5   > 60 to ≤ 70 35.1 28.7 32.4 30.2 25.8    > 70 51.9 62.7 60.7 64.0 67.7 Partnership p = .44   Yes 85.8 86.4 91.3 88.2 90.3   No 14.2 13.6 8.7 11.8 9.7 Children p = .22   ≥ 1 80.7 79.7 78.0 88.4 84.0   0 19.3 20.3 22.0 11.6 16.0 Age at surgery (years) p < .0001   ≤ 55 11.5 8.8 8.3 2.2 6.5   > 55 to ≤ 65 37.7 27.6 32.4 36.7 25.8   > 65 50.8 63.6 59.3 61.1 67.7 Time since surgery (years) p = .12   1–2 29.8 27.9 22.1 18.7 35.5   3–5 31.5 33.0 34.5 31.7 25.8   > 5 38.7 39.1 43.4 49.6 38.7 Second primary cancer p = .93   Yes 8.7 7.5 7.6 7.9 6.5   No 91.3 92.5 92.4 92.1 93.5 Family history of PCa p = .43   Yes 28.4 27.6 29.7 28.1 12.9   No 71.6 72.4 70.3 71.9 87.1 Family history of cancer (other than PCa) p = .056   Yes 46.8 42.4 46.2 39.6 64.5   No 53.2 57.6 53.8 60.4 35.5 PSA Lever at diagnosis (ng/ml) p = .006   ≤ 4 11.9 8.3 8.3 9.4 6.5   > 4 ≤ 10 65.3 61.6 56.5 57.5 64.5   > 10 22.8 30.1 35.2 33.1 29.0 Gleason grade group (1–5) p < .0001   ISUP 1 17.7 11.7 14.5 10.1 0.0   ISUP 2 48.7 42.3 40.0 40.3 29.0   ISUP 3 22.6 27.8 29.0 21.6 45.2   ISUP 4 4.1 6.1 9.7 8.6 6.5   ISUP 5 6.9 12.1 6.9 19.4 19.4 Organ-confined stage at RP p < .0001   Yes 65.7 54.6 57.9 41.0 41.9   No 34.3 45.5 42.1 59.0 58.1 Biochemical recurrence p < .0001   Yes (progress not ongoing) 9.0 15.5 15.4 10.1 20.7   Yes (progress ongoing) 6.0 14.9 7.0 18.1 17.2   No 85.0 69.8 77.6 71.7 62.1 Ongoing treatment at survey p < .0001   Yes 3.1 13.6 2.1 13.7 19.4   No 96.9 86.4 97.9 86.3 80.7 Adjuvant therapy p < .0001   Radiotherapy 6.6 9.7 12.4 18.0 19.4   Androgen deprivation therapy 2.2 5.3 4.1 5.8 3.2   No 91.2 85.0 83.5 76.2 77.4 1 3 Journal of Cancer Survivorship Table 2 (continued) Someone who Patient Cancer conqueror Cancer survivor Victim has had cancer n = 627 (%) n = 145 (%) n = 139 (%) n = 31 (%) n = 830 (%) RCS Charlson Score (at surgery) p = .015   0 88.0 83.6 82.1 79.8 77.4   1 10.1 12.0 11.0 17.3 16.2   ≥ 2 1.9 4.4 6.9 2.9 6.4 Urinary continence p < .0001   Yes 77.0 77.5 78.2 62.0 40.0   No (continent prior to surgery) 23.0 22.5 21.8 38.0 60.0 Sexual activity independent of partner p = .0002   Yes 76.6 65.7 64.1 61.5 59.3   No (sexual activity prior to surgery) 17.1 24.1 27.5 25.7 26.0   No (no sexual activity prior to surgery) 6.3 10.2 8.4 12.9 14.8 Masturbation p < .0001   Yes 63.6 49.4 50.4 41.7 32.1   No (masturbation prior to surgery) 6.4 7.3 8.5 5.8 7.1   No (no masturbation prior to surgery) 12.4 16.6 16.3 22.5 25.0   No 17.6 26.7 24.8 30.0 35.7 Partnered sexual activity p = .042   Yes 46.5 40.5 38.9 34.3 30.8   No (partnered sexual activity prior to surgery) 33.5 34.6 36.5 32.4 42.3   No (no partnered sexual activity prior) 20.0 25.0 24.6 33.3 26.9 PHQ-2 (depression screening) p < .0001   Positive screening (≥ 3) 6.4 8.9 5.6 12.7 27.6   Negative screening (< 3) 93.6 91.1 94.4 87.3 72.4 GAD-2 (anxiety disorder screening) p < .0001   Positive screening (≥ 3) 6.1 7.3 4.9 15.3 29.0   Negative screening (< 3) 93.9 92.7 95.1 84.7 71.0 Quality of life QLQ-C30 p < .0001 MW: 74.7 SD:17.7 MW: 72.7 MW: 81.0 SD:15.4 MW: 69.1 SD:20.3 MW: 54.3 SD:18.9 SD:18.6 Distress (QSC-R10) FBK10 p < .0001   High (> 14) 19.4 26.4 14.7 35.8 58.1   Low (≤ 14) 80.6 73.6 85.3 64.2 41.9 Psychosocial counseling desired* p = .018   Yes 21.6 26.3 17.5 29.9 34.5   No 78.4 73.7 82.5 70.1 65.5 Perceived severity of disease p < .0001   High 42.0 42.9 42.7 61.5 90.3   Low 58.0 57.1 57.3 38.5 9.7 Benefit finding p < .0001   High 48.1 44.7 65.3 68.9 51.6   Low 51.9 55.3 34.7 31.1 48.4 PCa, prostate cancer; PSA, prostate specific antigen; ISUP, The International Society of Urological Pathology; RP, radical prostatectomy; RCS, Royal College of Surgeons; PHQ, patient health questionnaire; GAD, general anxiety disorder; QSC-R10, Questionnaire on Stress in Cancer Patients; EORTC QLQ, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire 15]. Taken together, this illustrates that in this analysis men Research on how to incorporate a cancer experience in affected by PCa did not identify with the term “survivor” in one’s identity has shown that some individuals choose to order to reflect a cured disease state or to actively embrace embrace actively engaging with their disease as part of their their personal achievements in the fight against their disease identity and that these individuals might benefit from such but in order to express being burdened by the therapy and approach with better psychological well-being as well as its long-term consequences. In such a context, men affected disease coping [10, 19]. In the survivorship movements in by PCa may consider themselves as wounded “survivor” of the USA, an identification as a “cancer survivor” has been PCa and radical prostatectomy. promoted as an exemplification of such active approach. But 1 3 Journal of Cancer Survivorship Table 3 Factors associated with cancer-related identities in multiple logistic regression analysis with backward elimination Someone who has Patient Cancer conqueror Cancer survivor had cancer OR [95% CI] OR [95% CI] OR [95% CI] OR [95% CI] Age at survey (years) [continues] 0.98 [0.97–0.99] Ongoing treatment at survey [ref: no]   Yes 0.43 [0.25–0.74] 2.59 [1.59–4.22] 0.22 [0.05–0.93] Biochemical recurrence [ref: no]   Yes (progress not ongoing) 0.66 [0.47–0.94] 1.57 [1.10–2.23]   Yes (progress ongoing) 0.54 [0.36–0.81] 1.91 [1.28–2.85] Continence [ref: yes]   No (continent prior to surgery) 0.72 [0.54–0.96] 1.99 [1.27–3.12] Sexual activity independent of partner [ref: yes]   No (sexual activity prior to surgery) 1.83 [1.15–2.91]   No (no sexual activity prior to surgery) 1.36 [0.65–2.85] Quality of life QLQ-C30 [continues] 1.38 [1.21–1.58] Distress (QSC-R10) FBK10 [ref: low (≤ 14)]   High (> 14) 0.69 [0.53–0.89] 1.41 [1.07–1.86] Perceived severity of disease [ref: low]   High 2.07 [1.33–3.24] Benefit finding [ref: low]   High 0.66 [0.52–0.83] 1.89 [1.27–2.81] 2.05 [1.30–3.23] PCa, prostate cancer; PHQ, patient health questionnaire; FU, follow-up; ref, reference; OR, odds ratio; CI, confidence interval; sec., secondary as being mentioned above without the proper context, the suggests that these men were more likely to be burdened term might not feel as suitable to individuals affected by with incontinence, high perceived disease severity, and cancer that want to incorporate an active overcoming of their anxiety, indicating the need for further psycho-oncological disease within their identity. In this survey, men were given support. the option to choose the more exaggerated term “cancer The findings of this analysis have to be considered within conqueror” to express such an outlook on their PCa experi- certain limitations. Due to the cross-sectional design, causal ence. Men who chose “cancer conqueror” as self-description assumptions on development of certain aspects of self-percep- were less likely to report cancer-related distress or an ongo- tion after radical prostatectomy should be further investigated ing therapy and were more likely to report higher quality in longitudinal studies. It is unclear whether certain psycho- of life as well as high benefit finding. These results sug- logical conditions after being affected by cancer might trigger gest that a rather confident and active way of cancer-related identification with a certain cancer-related self-perception or self-perception in men affected by PCa might be a sign of whether actively embracing an empowering cancer-related a good psychological adaptation and that these men should identity might lead to increased psychological resilience and be encouraged in embracing such an empowering approach. comfort. By only including men, who were primarily treated Another explanation for these results might be that a so far with radical prostatectomy, generalization towards all men indistinct moderator such as an optimistic and extroverted affected by PCa is limited, and implications for other cancer personality might give rise to a rather confident and active types must be treated with caution. However, radical prosta- way of self-description as well as lower distress and higher tectomy, which leads to sudden and potentially permanent psychological well-being. changes in the lives of affected men, is the most common form Only a minority of men in this analysis self-identified of primary therapy for men with localized PCa. Therefore, with the term “victim,” which stresses the seemingly piti- our data on a large sample of nearly 1800 men represents a ful fate and demanding therapy side effects of individuals substantial portion of men ae ff cted by PCa, who often require diagnosed with and treated for cancer. Most studies on the continued medical assistance after primary therapy. All infor- subject have found that self-perception as a “cancer victim” mation on the functional outcome after radical prostatectomy is associated with psychological distress [8]. Interpretation are patient reported and therefore do not equal a clinical diag- of the data on men that self-identify as “victims” are limited nosis. Nevertheless, assessment prior and post-surgery vali- as they only make up a small portion. Nevertheless, our data dates their clinical strength. Men were prompted to choose 1 3 Journal of Cancer Survivorship as you give appropriate credit to the original author(s) and the source, one of 5 terms that described them best with regard to their provide a link to the Creative Commons licence, and indicate if changes PCa experience. By applying forced choice, our data might were made. The images or other third party material in this article are represent self-perception after radical prostatectomy for PCa included in the article’s Creative Commons licence, unless indicated somewhat one-dimensionally. However, the different ways otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not of self-perception were uniquely associated with distinctive permitted by statutory regulation or exceeds the permitted use, you will clinical and psychological factors implying clinical relevant need to obtain permission directly from the copyright holder. To view a variance in the measured self-perception. copy of this licence, visit http://cr eativ ecommons. or g/licen ses/ b y/4.0/ . 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 References such as “someone who has had cancer,” and it seems appro- priate to address these men in such a way. Nevertheless, 1. Avery K, Donovan J, Peters TJ, Shaw C, Gotoh M, Abrams P. 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Journal

Journal of Cancer Survivorship: Research and PracticeSpringer Journals

Published: Apr 1, 2024

Keywords: Prostate cancer; Cancer-related identity; Self-perception; Cancer survivors; Survivorship; Radical prostatectomy

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