ABSTRACT

Objectives:

to know the therapeutic itinerary and to show the implications of breast cancer for women in a border town in southern Brazil.

Methods:

a qualitative research conducted based on the complexity paradigm, through interviews with 13 women with breast cancer undergoing outpatient treatment and data analyzed by thematic analysis.

Results:

the first signs and symptoms of breast cancer were noticed unexpectedly, in everyday moments and during routine visits. There was family support in the search for assistance in primary care services, but organizational barriers led this itinerary to private health services, including Paraguay. Coping with the disease and treatment was anchored in the family subsystem.

Final Considerations:

the paths for breast cancer diagnosis and treatment included families, primary care services and private health services, including from the neighboring country, considering the vulnerability of border regions to guarantee health care.

Descriptors:
Breast Neoplasms; Health Services Accessibility; Border Health; Qualitative Research; Women’s Health

RESUMEN

Objetivos:

conocer el itinerario terapéutico y mostrar las implicaciones del cáncer de mama para las mujeres de una localidad fronteriza del sur de Brasil.

Métodos:

investigación cualitativa, realizada con base en el paradigma de la complejidad, a través de entrevistas a 13 mujeres con cáncer de mama en tratamiento ambulatorio y datos analizados mediante análisis temático.

Resultados:

los primeros signos y síntomas del cáncer de mama se notaron de forma inesperada, en los momentos cotidianos y durante las visitas de rutina. Hubo apoyo familiar en la búsqueda de asistencia en los servicios de Atención Primaria, pero barreras organizacionales llevaron este itinerario a los servicios privados de salud, incluido Paraguay. El afrontamiento de la enfermedad y el tratamiento estaba anclado en el subsistema familiar.

Consideraciones Finales:

los caminos para el diagnóstico y tratamiento del cáncer de mama incluyeron familias, servicios de atención primaria y servicios privados de salud, incluso del país vecino, considerando la vulnerabilidad de las regiones fronterizas para garantizar la atención en salud.

Descriptores:
Neoplasias de la Mama; Accesibilidad a los Servicios de Salud; Salud Fronteriza; Investigación Cualitativa; Salud de la Mujer

RESUMO

Objetivos:

conhecer o itinerário terapêutico e mostrar as implicações do câncer de mama para mulheres em município de fronteira do sul do Brasil.

Métodos:

pesquisa qualitativa, conduzida com base no paradigma da complexidade por meio de entrevistas com 13 mulheres com câncer de mama em tratamento ambulatorial e dados analisados pela análise temática.

Resultados:

os primeiros sinais e sintomas do câncer de mama foram percebidos inesperadamente, em momentos cotidianos e durante atendimentos de rotinas. Houve apoio familiar na busca por assistência, em serviços de atenção primária, mas barreiras organizacionais conduziram esse itinerário aos serviços privados de saúde, inclusive do Paraguai. O enfrentamento da doença e tratamento foi ancorado no subsistema familiar.

Considerações Finais:

os caminhos para o diagnóstico e tratamento do câncer de mama incluíram as famílias, os serviços de atenção primária e os serviços privados de saúde, inclusive do país vizinho, considerando a vulnerabilidade de regiões de fronteira para garantir a assistência à saúde.

Descritores:
Neoplasias da Mama; Acesso aos Serviços de Saúde; Saúde na Fronteira; Pesquisa Qualitativa; Saúde da Mulher

INTRODUCTION

Breast cancer is the second most common type in the world and the most common among women. Statistics indicate an increase in its incidence in both developed and developing countries, and for Brazil the estimate for the 2020-2022 triennium is 66,280 new cases of the disease⁽¹1 Instituto Nacional de Câncer (INCA) Estimativa 2020: incidência de câncer no Brasil [Internet]. Rio de Janeiro: INCA; 2019[cited 2020 Jul 30]. Available from: https://www.inca.gov.br/estimativa/introducao
https://www.inca.gov.br/estimativa/intro... ⁾. It is among the most significant neoplasms, considering its high incidence, high mortality rates and because it causes harmful consequences to women, whether physical or psychological, constituting a serious public health concern worldwide⁽¹1 Instituto Nacional de Câncer (INCA) Estimativa 2020: incidência de câncer no Brasil [Internet]. Rio de Janeiro: INCA; 2019[cited 2020 Jul 30]. Available from: https://www.inca.gov.br/estimativa/introducao
https://www.inca.gov.br/estimativa/intro... ^-22 Instituto Nacional de Câncer (INCA). Controle do câncer de mama [Internet]. Rio de Janeiro: INCA, 2017[cited 2020 Jul 30]. Available from: http://www2.inca.gov.br/wps/wcm/connect/acoes_programas/site/home/nobrasil/programa_controle_cancer_mama/fatores_risco
http://www2.inca.gov.br/wps/wcm/connect/... ⁾.

The problem that converges to assistance to women in Brazil, in relation to breast cancer, refers to the high mortality rates justified by diagnoses of the disease in advanced stages, since if diagnosed and treated in a timely manner, prognosis changes and becomes up relatively good⁽²2 Instituto Nacional de Câncer (INCA). Controle do câncer de mama [Internet]. Rio de Janeiro: INCA, 2017[cited 2020 Jul 30]. Available from: http://www2.inca.gov.br/wps/wcm/connect/acoes_programas/site/home/nobrasil/programa_controle_cancer_mama/fatores_risco
http://www2.inca.gov.br/wps/wcm/connect/... ⁾.

The search for attention involves a variety of factors, which can delay the diagnosis and initiation of treatment for breast cancer. These factors include patients’ delay in reaching a health service, considering the organizational barriers present in developing countries and the late search for cancer care, for underestimating or not knowing the signs and symptoms⁽²2 Instituto Nacional de Câncer (INCA). Controle do câncer de mama [Internet]. Rio de Janeiro: INCA, 2017[cited 2020 Jul 30]. Available from: http://www2.inca.gov.br/wps/wcm/connect/acoes_programas/site/home/nobrasil/programa_controle_cancer_mama/fatores_risco
http://www2.inca.gov.br/wps/wcm/connect/... ^-33 Instituto Nacional de Câncer (INCA). Diretrizes para a detecção precoce do câncer de mama no Brasil [Internet]. Rio de Janeiro: INCA; 2015 [cited 2020 Jul 30]. Available from: http://www.inca.gov.br/rbc/n_62/v01/pdf/10-resenha-diretrizes-para-a-deteccao-precoce-do-cancerde-mama-no-brasil.pdf
http://www.inca.gov.br/rbc/n_62/v01/pdf/... ⁾.

Considering the geographic configuration in terms of access, history, culture and socioeconomic development in border regions, such as the triple border - Paraguay, Argentina and Brazil, including the city of Foz do Iguaçu, setting of this study, it appears that, in these regions, scarcity of resources and infrastructure for health care, precarious living conditions on the open border and great human mobility represent a major obstacle to the planning of preventive actions for breast cancer, making the border a space of greater vulnerability, for considering fragility in terms of health promotion, disease prevention and continuity of care⁽⁴4 Souza AJA, Simonian LTL. Os desafios das políticas públicas na tríplice fronteira Brasil, Colômbia e Peru. Rev Amazônia Investiga [Internet]. 2019 [cited 2020 30 Jul];8(24):541-5. Available from: https://amazoniainvestiga.info/index.php/amazonia/article/view/1015
https://amazoniainvestiga.info/index.php... ⁾.

Thus, knowing the therapeutic itinerary (TI) of women with breast cancer in a vulnerable region, from discovery to disease care, will be important to understand how people configure their paths in the search for health care and how health services are organized to support the care demands resulting from this complex disease⁽⁵5 Brustolin A, Ferreti F. Therapeutic itinerary of elderly cancer survivors. Acta Paul Enferm. 2017;30:(1). https://doi.org/10.1590/1982-0194201700008
https://doi.org/10.1590/1982-01942017000... ⁾.

OBJECTIVES

To know the therapeutic itinerary and to show the implications of breast cancer for women in a border town in southern Brazil.

METHOD

Ethical aspects

This study was submitted to and approved by a Research Ethics Committee and all participants signed the Informed Consent Form. To guarantee their anonymity, participants were identified by letters “PW”, which means “participating woman”.

Theoretical-methodological framework and type of study

This is a descriptive and qualitative research, conducted based on Edgar Morin’s Complexity Theory methodological framework.

The Complexity Paradigm presents a new way of looking and thinking about reality. It proposes the inseparability of the phenomena that make up the multidisciplinary mode and approach as a way of building knowledge, comprising complex thinking, i.e., challenging and fostering thinking. To this end, Morin considered principles to guide the cognitive steps of complex thinking: dialogic, gathering and connecting contradictory factors in an analysis of a given event; recursive principle, breaking with the linear understanding of cause-effect relationships; hologram, undoing with the propensity of reductionism and fragmentation and also overcoming the tendency to holism to look only at the whole; organizational, uniting the knowledge of the parts to the knowledge of the whole⁽⁶6 Morin E. Introdução ao pensamento complexo. Porto Alegre: Sulina, 2015. 120 p.⁾.

To guide the methodology of this study, the COREQ instrument was adopted.

Study setting

This research was carried out in Foz do Iguaçu, Brazil, which belongs to the triple border next to Cuidad del Este (Paraguay) and Porto Iguaçu (Argentina). The municipality has a public hospital that is a reference for oncology care and an Oncology Center, intended for assisting the population of the ninth health region’s municipalities in Paraná State. Moreover, it becomes responsible for assisting tourists and foreigners, considering that the city is touristic and there are health demands from neighboring countries. At Oncology Centers, medical and nursing consultations are carried out, and procedures such as chemotherapy, radiation therapy, hormone therapy and biopsies.

Data source

Women older than 18 years of age, undergoing outpatient treatment for breast cancer at the oncology center, users of the Unified Health System (SUS - Sistema Único de Saúde), without a diagnosis of mental health problems registered in medical records, and residents of Foz do Iguaçu were included. No participant was excluded, considering that the criterion would be the need for hospitalization in the period proposed for the study; however, one refused to participate, but did not state the reason. Thus, 13 women with breast cancer participated, five of whom were undergoing chemotherapy, six chemotherapy and radiotherapy, and two on hormone therapy. For most participants, the time between suspicion and confirmation of cancer was one month, as well as between diagnosis and the start of treatment.

As this is a qualitative research, the sum of the interviews was not relevant to the methodological proposal of this study. When the data started to generate constructs, making it possible to group subsidies for the understanding of the studied themes, and to transpose answers to the initial questions, data collection trajectory was ended⁽⁷7 Minayo MCS. Hermenêutica-dialética como caminho do pensamento social. In: Minayo MCS, Deslandes SF. Caminhos do pensamento: epistemologia e método. Rio de Janeiro: Fiocruz, 2013. 380 p.⁾.

Data collection and organization

Data collection took place from March to June 2018. Initially, contact was made at an Oncology Center, at which time the invitation to participate in the research was made, explaining the objectives and collecting the signatures of the Informed Consent Form. Then, a home visit was scheduled to conduct the in-depth interview, which was recorded on audio and transcribed in full, later, by the first author, who has professional experience in gynecological nursing. At the end, participants were able to listen to the audio of their participation. Family members were present for three participants during the interviews, but without any participation from them.

The interview started with the following guiding question: how was the path taken to discover and care for breast cancer? Other aspects were addressed during the interview, such as: sociodemographic conditions; diagnosis news; repercussions of cancer for women and family; motivations for following treatment; sought services. The average interview time was 40 minutes, without the need to repeat them and without the need for a previous pilot. To record the expressions throughout the interviews, as well as the participants’ environment, the researcher had a field diary.

Data analysis

Thematic analysis⁽⁸8 Minayo MCS. O desafio do conhecimento: pesquisa qualitativa em saúde. 10 ed. São Paulo, 2007, p. 406.⁾ was chosen to contextualize the empirical data. The content for analysis was obtained by transcribing and organizing the interviews, successive readings, pre-analysis, material exploration, treatment of results and interpretation, to finally describe the categories for discussion, which were identified throughout the research, as they proved to be important to present the TI of breast cancer women in a border municipality.

RESULTS

Participants have an average age of 49.9 years, mostly white, Catholic and with high school education. Concerning marital status, they are married or live in a stable relationship. They have their own house and paid work, with an average family income of US$ 380.74; also, do not receive government aid and use only health services linked to SUS.

Participants’ narratives reflect the main aspects of the paths taken for the discovery and care of breast cancer in the border region, which were expressed by the thematic category: Perceiving the first sign of the disease and health care search. From diagnosis, it became relevant to show the implications of this disease for women’s lives, translated by the category: Confirmation of breast cancer diagnosis and its implications for the lives of women affected by cancer.

Perceiving the first sign of the disease and health care search

The paths taken by women with breast cancer begin to be traced from the perception of the first sign of the disease. They detect something modified in their bodies and this can happen by chance, unexpectedly through palpation and generates suspicion of some health problem.

There are also women who do not notice changes in their bodies and the lump is discovered only by the result of screening tests, causing them great concern and association with a probable disease.

When perceiving something wrong in their breasts, many women feel unprepared, so family support is important to encourage them to seek professional help and, consequently, look for a diagnosis.

This disturbing discovery raises doubts, concerns, and even despair. Thus, women understand the need to seek professional care, and their alternative are Primary Health Care (PHC) services, close to their homes, and this search is sometimes immediate, sometimes late.

In a field diary record, it was found that one participant waited to pass her period to seek help after detecting the lump, as she considered that it could be a hormonal change. Meanwhile, another waited ten years to investigate the lump, as she felt no discomfort. It is important to highlight that such waits contributed to the postponement of diagnosis and beginning of treatment.

Faced with the need to seek a diagnosis, there are women who face difficulties in accessing public health services, needing to resort to private services as an option for care. Because they live in a region of cross-border flexibility, they overcome geographical barriers and seek care in health services in the country next to Brazil, Paraguay, because they consider these services to be less costly. However, the dissimilar experiences of encounters or disagreements between women with breast cancer and health services lead to the construction of itineraries for acquiring access to health networks, according to their different needs.

As well as access to health services, the paths taken to elucidate the diagnosis and start treatment are accompanied by innumerable challenges with regard to obtaining exams and referral to a specialist. In these situations, even with difficulties, the participants pay for these exams in order to streamline and receive care.

It is well known that participating women do not follow the same path to discover the lump. If, on the one hand, there are women who look for family care subsystems, evidenced when family counseling is attended and valued, on the other hand, care search is professional, considering a preponderant and immediate subsystem.

After the hard walk to receive the diagnosis, participants verbalize that in the itinerary for health care, the moment when they receive the news of the disease is more difficult and extremely distressing, and that they experience a strong emotional impact, accompanied by anguish and fear for being with a stigmatizing disease, strongly linked to the idea of suffering and death, for them and for others.

Despite all these feelings, upon receiving the news, the first and greatest concern is with the family, about how their partner and children would react when learning about their diagnosis.

Thus, after experiencing the sad finding of the diagnosis of breast cancer, women follow TI using the family health care subsystem. This subsystem is affirmed through concern for the family through the news of the disease, which in a way encourages them to seek treatment and to continue living.

Confirmation of breast cancer diagnosis and its implications for the lives of women affected by cancer

The news of breast cancer is frightening; there is a rupture of the psychic balance, which generates tension, fear, with strong subjection to inner conflicts as a result of experiencing this conflicting situation, accompanied by anguish and emotional stress. The consequences of breast cancer diagnosis in young women differ in some ways from other women.

Among the narratives, the possibility emerges that cancer may prevent them from working and having children, leaving them worried and sad about the finitude imposed by the disease and treatment.

Thus, through the various inferences of the diagnosis found by women with breast cancer, both young and the others, it is necessary to design methods of coping at this stage of the disease. For coping with the diagnosis, the emotional support of family members is of great value, in order to contribute positively to their recovery, in addition to making them more confident and safer.

When faced with the diagnosis of the disease, women feel the need to face their new situation and again resorted to the family health care subsystem, which is noticeable in the emotional support of family members and partners.

It is important to remember that even in the face of the emotional impact with the diagnosis of breast cancer, there are different behaviors, advancing towards treatment and presenting a positive coping with the disease.

In their care and healing itinerary, women experience many obstacles, be they functional, financial, and psychological. But they show the awareness of the severity of this disease and understand the need to face the problem aiming at a cure, combined with positive thinking and determination, with family support to face breast cancer in all its dimensions.

DISCUSSION

This investigation glimpsed important aspects related to the paths taken by women to answer a complex problem, breast cancer, which requires the individual to seek care, assistance, and cure, and has implications for their lives and for family and social life. Analyzing the TI of these women in the border region, with all its diversity, contradictions, and uncertainties, is connected to the proposed principles of complex thinking, considering that in border regions complex environments and situations also emerge.

The dialogical principle is evidenced by the perception of the first sign with suspicion of the disease and the report of the diagnosis. Health and disease, life and death, despite being antagonistic, are complementary, since they interfere with the diversity of relationships, in the individuals’ interaction with themselves and with the environment. This order and disorder compete, but they also cooperate in the organization of the universe, because if the world were made only out of order, there would be nothing new nor creation. On the other hand, if it were only disorder, it would not constitute an organization and would be unable to promote development and innovation⁽⁹9 Morin E. A cabeça bem-feita: repensar e reforma, reformar o pensamento. Rio de Janeiro: Bertrand Brasil, 2000. 128 p.⁾.

Under this logic, the contrary recommendation of the Ministry of Health of Brazil to the teaching of breast self-examination as a method of breast cancer screening and the contribution of self-examination practice cooperate with each other for health promotion. Thus, on the one hand, self-examination has low sensitivity and specificity, which causes a high percentage of false-negative tests, on the other hand, the eventual practice of self-examination, combined with observation as a way of getting to know the body itself, the normal aspects of the breast and the warning signs, among them lumps, contributes to early identification of worrying signs and symptoms of breast cancer⁽¹1 Instituto Nacional de Câncer (INCA) Estimativa 2020: incidência de câncer no Brasil [Internet]. Rio de Janeiro: INCA; 2019[cited 2020 Jul 30]. Available from: https://www.inca.gov.br/estimativa/introducao
https://www.inca.gov.br/estimativa/intro... ^-22 Instituto Nacional de Câncer (INCA). Controle do câncer de mama [Internet]. Rio de Janeiro: INCA, 2017[cited 2020 Jul 30]. Available from: http://www2.inca.gov.br/wps/wcm/connect/acoes_programas/site/home/nobrasil/programa_controle_cancer_mama/fatores_risco
http://www2.inca.gov.br/wps/wcm/connect/... ⁾.

Mammography is the most reliable radiological exam to assess the breasts and detect any changes, even before they are noticed, whether it is a benign lesion or cancer, as it identifies tumors that are less than one centimeter and imperceptible to touch, the stage of the disease with excellent chances of cure. Furthermore, it is directly related to the decrease in mortality caused by this neoplasm. However, there is a small rate of cases in which early signs may be obscured by unusually dense breast tissues. Thus, it is necessary to perform digital mammography or ultrasound in women with very firm or bulky breasts, which can hide initial lumps⁽¹⁰10 Maulaz CM, Valentini BB, Silva AMM, Papaleo RM. Estudo comparativo do desempenho de imagens por ressonância magnética, mamografia e ecografia na avaliação de lesões mamárias benignas e malignas. Rev Bras Física Médica. 2018;12(2):23-9. https://doi.org/10.29384/rbfm.2018.v12.n2.p23-29
https://doi.org/10.29384/rbfm.2018.v12.n... ^-1111 Ohl ICB, Ohl RIB, Chavaglia SRR, Goldman RE. Public actions for control of breast cancer in Brazil: integrative review. Rev Bras Enferm. 2016;69(4):746-55. https://doi.org/10.1590/0034-7167.2016690424i
https://doi.org/10.1590/0034-7167.201669... ⁾.

In the organizational principle, it is possible to understand how the TI was built and organized after lump detection and activation of professional and family health care subsystems; thus, it is necessary to know the parts and vice versa, as it is impossible to know the whole without knowing the parts and knowing the parts without knowing the whole. Organizing the whole produces new properties in relation to the parts considered in isolation⁽⁶6 Morin E. Introdução ao pensamento complexo. Porto Alegre: Sulina, 2015. 120 p.⁾.

Among the comings and goings of the paths identified by participants, PHC services were included, which are closer to families and the community. These services should be the preferred port of the system, but not restricted, as the system must be organized according to individual or collective health needs. PHC is responsible for identifying, coordinating and transforming these needs, as it is responsible for ordering access to other levels of health care and care regulation as an instrument to adapt supply to demand, prioritizing cases according to the classification of clinical criteria⁽⁵5 Brustolin A, Ferreti F. Therapeutic itinerary of elderly cancer survivors. Acta Paul Enferm. 2017;30:(1). https://doi.org/10.1590/1982-0194201700008
https://doi.org/10.1590/1982-01942017000... ^,1212 Starfield B. Atenção primária: equilíbrio entre necessidades de saúde, serviços e tecnologia. Brasília: UNESCO: Ministério da Saúde, 2002. 710 p.⁾.

Moreover, the health-disease process does not happen separately from the aspects of an individual’s life and that of a society, it is part of the entire socio-cultural context. Therefore, it is necessary to understand the path people take in search of care for their health conditions. In health anthropology, this path is called IT, which includes a succession of decisions and agreements between individuals and groups with different interpretations of the disease and the choice of appropriate therapy⁽¹³13 Lima NC, Baptista TWF, Vargas EP. Ensaio sobre ‘cegueiras’: itinerário terapêutico e barreiras de acesso em assistência oftalmológica. Interface (Botucatu). 2017;21(62). https://doi.org/10.1590/1807-57622016.0642
https://doi.org/10.1590/1807-57622016.06... ⁾, i.e., an intense movement between the whole and the parts⁽⁶6 Morin E. Introdução ao pensamento complexo. Porto Alegre: Sulina, 2015. 120 p.⁾.

TI, based on the health care systems model, contains three subsystems, in this order described: family, popular, and professional⁽¹⁴14 Kleinman A. Concepts and model for the comparison of medical systems as cultural systems. Soc Sci Med. 1978. https://doi.org/10.1016/0160-7987(78)90014-5
https://doi.org/10.1016/0160-7987(78)900... ⁾.

The family subsystem, widely referred to in the present investigation, is attributed to popular knowledge, which includes subjects, their relatives, friends, neighbors and social networks. It is in this subsystem that prudence with the disease is exercised through changes in attitudes and eating habits, domestic medicines, emotional support and religious resources. The popular subsystem, not evidenced by participants, concerns healing professionals who are not legally recognized, who use devices such as herbs, engendered therapies, and healing rituals. Although identified with less intensity, the professional subsystem is the one on which the legally recognized official health care network is based. The transit of individuals within these three systems provides the decision of treatment and care they will perform⁽¹⁴14 Kleinman A. Concepts and model for the comparison of medical systems as cultural systems. Soc Sci Med. 1978. https://doi.org/10.1016/0160-7987(78)90014-5
https://doi.org/10.1016/0160-7987(78)900... ^-1515 Younes S, Rizzotto MLF, Araújo ACF. Itinerário terapêutico de pacientes com obesidade atendidos em serviço de alta complexidade de um hospital universitário. Saúde Debate, 2017;41(115). https://doi.org/10.1590/0103-1104201711505
https://doi.org/10.1590/0103-11042017115... ⁾.

The lack of connection between health care systems may lead to a delay in the investigation of breast lesions suspected of breast cancer, resulting in a late diagnosis, as well as a delay in the time for carrying out diagnostic tests and starting treatment, and may negatively impact healing and/or survival time. Late therapy can compromise quality of life, as it undertakes more aggressive interventions, varied treatments and consequently more sequel⁽¹⁶16 Reis APA, Panobianco MS, Gradim CVC. Facing women who lived breast cancer. Rev Enferm Cent O Mineiro, 2019;9:e2758 https://doi.org/10.19175/recom.v9i0.2758
https://doi.org/10.19175/recom.v9i0.2758... ⁾.

As the border is considered a vulnerable and complex environment, it reflects on the problems that translate this context. There is a clear overload on public health services at the excellent points of care, resulting in a reduction of human, structural, financial and logistical resources for breast cancer prevention and treatment assistance for Brazilian citizens.

The regulatory criterion for the transfer of financial resources adopted to SUS is the population contingent, which is unfavorable. Thus, foreign populations and Brazilians who live in neighboring countries and who seek health care in the Brazilian space are not counted in these costs. Thus, the cost ends up becoming scarce and local planning directly affected, showing difficulty planning and providing specific public policies for these municipalities⁽¹⁷17 Santos CT, Rizzotto MLF, Carvalho M. Public funding for health care in municipalities of the state of Paraná located in the border region (2000 - 2016). Cogitare Enferm. 2019;24. https://doi.org/10.5380/ce.v24i0.61110
https://doi.org/10.5380/ce.v24i0.61110... ⁾.

Furthermore, the fundamentals of integrality and universality of SUS are considered as a strong reason for the movement of foreigners to Brazil. Commuting is instigated by access, resolution and quality of health systems⁽¹⁸18 Aikes S, Rizzotto MLF. Integração regional em cidades gêmeas do Paraná, Brasil, no âmbito da saúde. Cad Saúde Pública. 2018;34(8). https://doi.org/10.1590/0102-311X00182117
https://doi.org/10.1590/0102-311X0018211... ⁾. This coming and going, people entering and leaving between countries is common in the open border’s daily life, we notice the lack of a single standard for the itinerary, a fact confirmed in this research.

In addition to the organizational problems for breast cancer diagnosis and treatment, neoplasm recognition due to its high rate of morbidity and mutilation demonstrates important implications for self-esteem and generates great psychological disturbance, which begins when women begin to suspect that the lump found may be cancer⁽¹⁶16 Reis APA, Panobianco MS, Gradim CVC. Facing women who lived breast cancer. Rev Enferm Cent O Mineiro, 2019;9:e2758 https://doi.org/10.19175/recom.v9i0.2758
https://doi.org/10.19175/recom.v9i0.2758... ⁾.

Since it is a stigmatizing disease, fear of death is a feeling awakened by the news of breast cancer, as it is associated with poor prognosis, aggressive treatment, pain, suffering, incurability and the strong correlation between cancer and death⁽¹⁹19 Milagres MAS, Mafra SCT, Silva EP. The impacto f câncer on the everyday life of women in their family nucleus. Ciênc Cuid Saúde. 2016;15(4). https://doi.org/10.4025/cienccuidsaude.v15i4.29893
https://doi.org/10.4025/cienccuidsaude.v... ⁾.

The illness and death process are somewhat conflicting for the female role within family spheres. Over time, the responsibility for household chores and the actions that derive from caring for the home has been attributed and instituted in society as something natural and exclusive to women, playing the role of home, children and husband caregivers, promoter supportive relationships and even family subsistence⁽²⁰20 Oliveira MR, Mattias SR, Santos IDL, Pinto KRTF, Gomes NCC, Cestari MEW, et al. Family facing breast cancer diagnosis under the woman’s viewpoint. Rev Pesq Cuid Fund. 2018;10(4):932-35. https://doi.org/10.9789/2175-5361.2018.v10i4.932-935
https://doi.org/10.9789/2175-5361.2018.v... ^-2121 Pinheiro CPO, Silva RM, Brasil CCP, Bezerra IC, Cavalcante ANM, Alexandre AV, et al. Procastination in the early detection of breast câncer. Rev Bras Enferm. 2019;72(Suppl3):227-34. https://doi.org/10.1590/0034-7167-2018-0547
https://doi.org/10.1590/0034-7167-2018-0... ⁾. These functions are altered by the discovery of breast cancer, and complicated by treatment, implying changes in the way of life, plans, priorities and the routine of the home, limiting the continuity of this autonomy and its daily practices. Moving from caregiver to the person in need of care can lead to feelings of loneliness, helplessness, insecurity, depression, social isolation and procrastination with breast health care⁽²⁰20 Oliveira MR, Mattias SR, Santos IDL, Pinto KRTF, Gomes NCC, Cestari MEW, et al. Family facing breast cancer diagnosis under the woman’s viewpoint. Rev Pesq Cuid Fund. 2018;10(4):932-35. https://doi.org/10.9789/2175-5361.2018.v10i4.932-935
https://doi.org/10.9789/2175-5361.2018.v... ^-2121 Pinheiro CPO, Silva RM, Brasil CCP, Bezerra IC, Cavalcante ANM, Alexandre AV, et al. Procastination in the early detection of breast câncer. Rev Bras Enferm. 2019;72(Suppl3):227-34. https://doi.org/10.1590/0034-7167-2018-0547
https://doi.org/10.1590/0034-7167-2018-0... ⁾.

Family members also experience conflicting situations and feelings of discomfort, despair and concerns before the pain and suffering of women affected by breast cancer. These feelings are acceptable due to the unknown and uncertainties of cancer, which make them vulnerable, tense and worried due to changes in the whole family environment. However, at that moment when a woman needs to be cared for, she will need family support, understanding and comfort as facilitators for the moment lived⁽¹⁹19 Milagres MAS, Mafra SCT, Silva EP. The impacto f câncer on the everyday life of women in their family nucleus. Ciênc Cuid Saúde. 2016;15(4). https://doi.org/10.4025/cienccuidsaude.v15i4.29893
https://doi.org/10.4025/cienccuidsaude.v... ⁾, a reality present for the women participating in this study.

Breast cancer is more common in women over 40 years of age, however there has been an increase in its incidence in young women (under 40 years old)⁽²²22 Vargens OMC, Brasil TA, Cardozo IR, Silva CM. Mulheres jovens com câncer de mama: lutando contra o câncer e o espelho. Enferm Obstétrica[Internet]. 2017[cited 2020 Jul 30]. Available from: http://www.enfo.com.br/ojs/index.php/EnfObst/article/view/109/57
http://www.enfo.com.br/ojs/index.php/Enf... ⁾. Three women in this age group participated in this study.

For younger women, the meaning of breast lump detection is not linked to the sense of cancer as in older women. Moreover, they consider that they are not at risk age for this neoplasm. When there is awareness of their condition of being young and having breast cancer, their feelings experienced are contradictory, profound and fearful, and often, the denial of such condition causes them to postpone therapy and, therefore, have a worsen prognosis⁽²²22 Vargens OMC, Brasil TA, Cardozo IR, Silva CM. Mulheres jovens com câncer de mama: lutando contra o câncer e o espelho. Enferm Obstétrica[Internet]. 2017[cited 2020 Jul 30]. Available from: http://www.enfo.com.br/ojs/index.php/EnfObst/article/view/109/57
http://www.enfo.com.br/ojs/index.php/Enf... ⁾.

Continuing with daily activities, such as work, is a favorable strategy to reduce anxiety and idleness, helping with recovery, emotional control, distracting and promoting self-esteem, in addition to being a positive factor in the healing process. However, maintaining work can generate discomfort for women, considering the difficulties in reconciling work and treatment, resulting in a high percentage of absences from work or in the treatment itself, absences from work activities due to the physical and emotional limitations produced by these therapies⁽²³23 Magalhães PAP, Loyola EAC, Dupas G, Borges ML, Paterra TSV, Panobianco MS. The meaning of labor activities for young women with breast neoplasms. Texto Contexto Enferm. 2020;29:e20180422. https://doi.org/10.1590/1980-265x-tce-2018-0422
https://doi.org/10.1590/1980-265x-tce-20... ⁾.

In these perspectives, breast cancer is mediated by prejudices and skeptical feelings and the confirmation of the diagnosis generates a great repercussion and transformation in women’s and their families’ lives. This effect can only be mitigated if their families are informed and guided about the disease, treatment, rehabilitation and also on how to help women in coping with physical and psychosocial changes experienced during this process. Therefore, family and partner support is essential for women to obtain encouragement to face the disease and suffering arising from treatment, in addition to encouraging them to overcome their battle for life with balance and emotional security, making sure that they do not this alone⁽²⁴24 Alvares RB, Santos IDL, Lima NM, Mattias SR, Cestari MEW, Gomes NCRC, et al. Sentimentos despertados nas mulheres com câncer de mama. J Nurs Health. 2017;7(3):e177309. https://doi.org/10.15210/JONAH.V7I3.12639
https://doi.org/10.15210/JONAH.V7I3.1263... ⁾.

Coping is classified as a method, which can be trained, applied and adjusted, regardless of the stress experienced. If this method is effective, stress will be overcome, otherwise there will be a need for intellectual reconsideration of the stressor and necessary changes in actions to solve the problem. Stress can be triggered by several factors, it is inevitable and is part of human evolution; however, each person when faced with a factor of exhaustion, will have a coping based on their culture, experiences, values, and feelings. The news of the disease generates several stress-producing sensations that demand a method of coping. The choice of the coping mode will be essential to define whether the moment lived will be one of overcoming or disaster⁽²⁵25 Silva AV, Zandonabe E, Amorim MHC. Anxiety and coping in women with breast cancer in chemotherapy. Rev Latino-Am Enfermagem. 2017;25:e2891. https://doi.org/10.1590/1518-8345.1722.2891
https://doi.org/10.1590/1518-8345.1722.2... ⁾.

Starting from these conceptions, the hologram principle is verified in the understanding that each part will be necessary to contemplate the whole, i.e., the part is in the whole and the whole is in the part. For this, it is essential to understand the language, culture and precepts of women with breast cancer, to understand the coping carried out. Thus, this principle highlights this apparent paradox of complex systems, in which not only the part is in the whole, but in which the whole is inscribed in the part⁽⁹9 Morin E. A cabeça bem-feita: repensar e reforma, reformar o pensamento. Rio de Janeiro: Bertrand Brasil, 2000. 128 p.⁾.

The interconnection of women’s narratives with the recursive principle⁽⁶6 Morin E. Introdução ao pensamento complexo. Porto Alegre: Sulina, 2015. 120 p.⁾ is demonstrated in the characterization of women by self-producing and self-organizing from reality, from the experiences and experiences obtained during TI, from the moment of suspicion of the disease to the start of treatment. The impact of the news of the disease, the fear of death due to the stigma of cancer, as well as the concern for the family, produced changes and new orders in the way of life, plans and priorities. Furthermore, coping and the repercussion of the diagnosis for women and their families also contributed to the self-organization of the whole, i.e., TI.

For women with breast cancer, knowing about the disease caused a disorder in many aspects, both individual and nuclear (family), thus requiring a new dimension, i.e., disorders that are organized.

To conclude, in the course of the TI performed by participants, the itineraries “weave”, “intertwine” between the dimensions directed towards a common objective, which is health care search. Thus, according to complex thinking, knowledge is a process under construction, unfinished and subject to reconstruction, subordinated to the external environment (society, culture, and means of achieving it). Concomitantly, it is independent, as it organizes itself during its inextinguishable construction.

Study limitations

The limitations of this study are related to a group composed only of women residing in Brazil, which made it impossible to know different TIs in the three border cities - Foz do Iguaçu (Brazil), Cuidad del Este (Paraguay), and Porto Iguaçu (Argentina). In this regard, the object of study is complex, making it important to expand to other investigations, having as a backdrop the observation of the ways of care and cure of breast cancer to reduce vulnerabilities in border regions.

Contributions to nursing, health, and public policies

This study contributes to designing strategies to improve the quality of nursing care for the diagnosis and treatment of breast cancer, in addition to favoring possibilities for access to PHC services to care for these women, especially for border regions, considering the vulnerability in cooperation between countries to guarantee assistance in public health services.

FINAL CONSIDERATIONS

In this investigation, the discovery of the first signs and symptoms of breast cancer was perceived unexpectedly, in everyday moments and during routine visits, leading women to despair, but with family support they were encouraged to seek health care. The itinerary of seeking professional attention was initiated in PHC services, and for finding organizational barriers in public health services, especially in the acquisition of imaging exams, they included in their care paths, private health services, including from Paraguay.

In this TI experienced by breast cancer women, feelings of distress were gaining ground, and the emotional impact, fear and anguish were sometimes related to the disease and to the family reaction.

The consequences of the trajectory of breast cancer were divergent among young and older women. For young women, concerns involved the absence of paid work, impediments to procreation, while for older women, the major concern was related to the care of other family members. And to face this situation, they again resorted to family support and care, and at this moment, positive feelings, determination and courage emerged to face the complexity of the physical, emotional, family and social problem that is breast cancer.

SUPPLEMENTARY MATERIAL

This manuscript is the result of a doctoral thesis presented to the University of São Paulo at Ribeirão Preto College of Nursing in 2020, entitled “Therapeutic itinerary of breast cancer women in a border municipality”, available at: https://www.teses.usp.br/teses/disponiveis/22/22133/tde-18092020-101923/publico/ANDREAFERREIRAOUCHIFRANCA.pdf

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