Patient, cured, victim or survivor of urological cancer? A qualitative study*

ABSTRACT Purpose: to describe the meanings that patients attribute to the term cancer survivor and to analyze the identities assumed by them according to their experience with the disease. Methods: qualitative study with a narrative method, theoretical framework of the medical anthropology and identity concept. The study included 14 participants, men and women, diagnosed with urologic cancer. The semi-structured interviews were performed at the individual’s home, after confirming participation. Results: eight participants assumed to be survivors, but five also assumed at least one other identity, in addition to cancer survivor. In contrast, among the six who defined themselves as cured, only one indicated another identity. Four considered themselves as victims and only two as cancer patients. However, the latter - cancer patient and victim - assumed at least one other associated identity. Conclusions: allowing patients to reflect on themselves and their experience with the disease, as well as attributing themselves a new identity, will be directly related to the wellbeing and momentum the survivor is going through. Therefore, it can direct care in the cancer survivorship phase according to each survivor’s individual context.


Introduction
The concept of cancer survivor refers to someone that has gone through several changes and constant challenges with continuous difficulties, which can be positive and negative. According to this study, not all individuals would identify with the term survivor because they believe that it is not appropriate or does not define their experience (1) .
The term cancer survivor for those diagnosed with cancer remains unclear and uncertain, and there is a lack of a consistent and usual operational and conceptual definition that hinders the suitability of the term among the public concerned, despite its widespread use (2)(3)(4) .
Research involving the identity of individuals with or after cancer shows that many respondents cannot define themselves as survivors, especially when they are still dealing with the disease. However, a qualitative descriptive study (5) with 155 female African American breast cancer survivors showed that some of the women could define themselves as cancer survivors because they remained alive and would be survivors for the rest of their lives, reflecting that life is just starting over. In contrast, other women either did not believe that being a survivor reflected their history with the disease or thought the term was unfamiliar.
The human being is a biological entity inseparable from its culture, and cancer survivorship is a process constituted and lived by this being, i.e., it is a culturally variable process. However, a theoretical approach that focuses on the cultural and contextual aspects involved in the concept is necessary to obtain the meanings of cancer survivorship among cancer patients. The concern here is not only to write something, or highlight new terms (Cancer Survivors and Cancer Survivorship), but to mobilize patients, families, oncologists, nurses, researchers and others affected by the cancer experience (6) . It is from the knowledge of the survivors' individuality, beliefs and values, and social dimensions that professionals can learn what is relevant to consider in the care of the cancer survivorship phase. Given the uncertainties, inconsistencies of the definition of being a cancer survivor, and the fact that it is not used in the Brazilian health context, the study sought to answer the following questions: How do cancer patients interpret the term cancer survivor?
Which identities portray their experience with the disease?
How is each identity interpreted? Thus, this study has two main objectives: to describe the meaning that the cancer patients attribute to the term cancer survivor, and to analyze the identities assumed by them according to their experience with the disease.

Method
The cancer survivors are the "objects" of choice to study such phenomena and, assuming that their discourses are permeated by symbols, beliefs and cultural values, the medical anthropology theoretical reference was adopted, which will guide the analysis of the meanings based on the cancer survivors' reports. Medical anthropology assumptions join the concepts of culture and disease and consist of deciphering the implicit and explicit meanings in the subjects' language, interpreting their intentions, explanations, and historicity (7) .
The researchers assumed that the cancer patients' perceptions of the health and disease process and their involvement during this process, besides the fluctuations of time and the changes resulting from living with cancer, will influence the construction and elaboration of the transition from being or feeling as a survivor, a patient, a victim or a cured individual, as discussed below (7)(8) . In the anthropological approach, identity is like a sociocultural conditioned phenomenon, i.e., it refers to both collective identification and self-identification of individuals; they are correlated, considering that they are not innate, but they also cannot be detached from the individuals' historical biography, their culture and their environment (8) .
The identity concept is very difficult to explain, considering its complexity and multi-dimensions, in addition to the diverse theoretical perspectives involved, including different explanatory terms. However, the basic meaning of identity refers to the place to which a person or group belongs and what is expressed as their self-image or common image that integrates them within themselves, or as part of a group, and also what differentiates them from others (8) .
It's a qualitative exploratory study with a narrative method. Narratives are the main expressions used by individuals to tell their stories (i.e., dramas, defeats, achievements, joys). To narrate is the act of telling an event that has a beginning, middle and end, and allows accessing the other's experience. This method is based on the premises (9) of individual narrative centered on experience. These premises refer to the act of narrating as a representation and reconstruction of events, time and place and experiences, emphasizing that they cannot be repeated exactly as they occurred because words never mean the same thing twice. The interest in construction and reconstruction in the narrative research guided by experience enables researchers to have a personal view of a narrative and that is treated as the only truth among many other narratives; and finally, the narrative serves as a transformation, which is the last premise and represents the personal changes that occurred throughout the individual's experience with the disease.  Transcription was initiated by the main investigator after data collection, and the field diary was included in the text. The participants had the opportunity to read and revise the transcriptions, which helps to avoid wrong interpretations. Then, the inductive thematic analysis, a six-step process consisting of an interpretive analysis that searches for meanings, was initiated (10) according to the common aspects, relationships and differences between them, expressed in subjects. The subject represents a level of meaning within the data body, regardless of its frequency, but dependent on the theoretical perspective of the researcher to interpret the results (10) . The process of the interview dynamics and the analyses of observations to understand how the participants perceived their disease experience was part of the construction of scientific knowledge through the hermeneutic circle. It is through this circle that the researcher describes, explains and interprets the narratives with understanding and alterity.
By examining the transcripts, relevant passages were highlighted and then analyzed as part of a whole to come to the understanding, explanation and interpretation of the common sense. The stories were grouped into a single and broad narrative synthesis, in the first person, involving the experience and transformations of all of the participants that were dialectically interpreted and discussed according to the category of choice. This synthesis was titled "What am I? Am I a cancer survivor? Self-reflection of identity after primary cancer treatment" and was used to discuss the thematic categories presented in the results, in which the excerpts from the participants' speeches are marked in italics.

Results
The study has 14 participants and the results were divided into two categories: I am not a patient, maybe a survivor or a victim, and I want to be cured; the meanings of the cancer survivor term. Table 1  In fact, the initial intention was not to discuss other terms, but they helped the participants rethink and organize their speeches about their identity. Therefore, we asked about being a patient or not, and being a victim of the disease or not, because the participants showed ambiguities and lack of clarity in the answers about being a cancer survivor or not. These identities   Those who identified as victims were associated with the idea of not caring for the body, God allowed, I was attacked by the disease and have to live going to the hospital and know that "it", the cancer, is still there. These results reveal the persistent sense of guilt and concern that surrounds individuals who identify themselves as victims.
By analyzing why the eight participants had associated the survivor identity with their condition, the cancer was observed to be seen metaphorically as a war and, in that sense, if they are alive, it is because they won the it is a procedure that brings suffering and leaves marks (11) .
Another facet deduced from analysis of the narratives concerns the strong presence of religion in two different aspects: either between those who considered themselves to be survivors or those who used faith in God to feel cured:  after a year of follow-up and consequent improvement (12) .

Identity oscillates between different cultural groups;
it is neither fixed nor universal.  (13) . Therefore, from the point of view of anthropology, the identity is never given to someone, but it is always constructed through elements present in each cultural group (8) .
Following this logical thinking, it is easy to understand why extremely ill and cured are the terms most understood by the patient. Cured refers to what is good, to being healthy, regardless of the course of the disease, considering that only one patient experienced recurrence, and reflects the possible absence of cure in face of the possibility of its recurrence. The belief that one day they may indeed be free from the disease is very strong and overcomes the uncertainties that the disease conveys. In one study (14) ,  (15)(16) . Thus, the cancer survivor identity may be associated with psychological well-being (5,16) and personal growth (4,(15)(16)(17) . Another point is that patients who tend to consider themselves as survivors have a deep desire to help others who experience the same situation (18) .
They also wish to participate in related activities, such as support groups and social events (2,16) . The literature has already shown that the patient's psychological aspects have an influence on their assumed identity (15)(16) . Many studies have also associated potential post-cancer identities with not only one's experience with the disease, but also mental aspects and physical wellbeing. Accompanying and recognizing, the individual's psychological well-being and how patients cope with their disease through self-definition helps health care professionals to manage and improve their care.
Where the culture to identify the disease and seek cure prevails, it is extremely difficult to insert a new term, in this cancer survivor, although not impossible because it is a concept more appropriate to the group in question.
However, the consolidation of a new term requires a great deal of effort by the professionals, patients and family members; moreover, effective public policies are necessary to socially introduce a different perspective of seeing cancer, which gives patients a new way of seeing themselves (14) . can influence their readjustments to daily life and the quality of their experience as a cancer survivor (19) .
Before the discussion about the change of identities and what would better represent those who were diagnosed with cancer and concluded the treatment,