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Psychosocial needs of young breast cancer survivors in Mexico City, Mexico

  • Harper G. Hubbeling ,

    Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Validation, Visualization, Writing – original draft, Writing – review & editing

    harper_hubbeling@hms.harvard.edu

    Affiliation Department of Medicine, Harvard Medical School, Boston, Massachusetts, United States of America

  • Shoshana M. Rosenberg,

    Roles Conceptualization, Supervision, Writing – review & editing

    Affiliations Department of Medicine, Harvard Medical School, Boston, Massachusetts, United States of America, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, United States of America

  • Maria Cecilia González-Robledo,

    Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Supervision, Validation, Writing – review & editing

    Affiliation Centro de Investigación en Sistemas de Salud, Instituto Nacional de Salud Pública, Cuernavaca, Morelos, Mexico

  • Julia G. Cohn,

    Roles Conceptualization, Writing – original draft, Writing – review & editing

    Affiliation David Rockefeller Center for Latin American Studies, Harvard University, Boston, Massachusetts, United States of America

  • Cynthia Villarreal-Garza,

    Roles Conceptualization, Methodology, Resources, Supervision, Writing – review & editing

    Affiliations Departamento de Investigación y de Tumores Mamarios, Instituto Nacional de Cancerología, Mexico City, Mexico, Centro de Cáncer de Mama, Tecnológico de Monterrey, Monterrey N.L., Mexico, Joven y Fuerte: Programa para la Atención e Investigación de Mujeres Jóvenes con Cáncer de Mama, Mexico City, Mexico

  • Ann H. Partridge,

    Roles Conceptualization, Supervision, Writing – review & editing

    Affiliations Department of Medicine, Harvard Medical School, Boston, Massachusetts, United States of America, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, United States of America

  • Felicia M. Knaul

    Roles Conceptualization, Methodology, Supervision, Writing – review & editing

    Affiliations Department of Public Health Sciences, University of Miami Miller School of Medicine, Coral Gables, Florida, United States of America, Institute for Advanced Study of the Americas, University of Miami, Coral Gables, Florida, United States of America, Programa Universalidad y Competitividad en Salud, Fundación Mexicana para la Salud, Mexico City, Mexico, Tómatelo a Pecho, Mexico City, Mexico

Psychosocial needs of young breast cancer survivors in Mexico City, Mexico

  • Harper G. Hubbeling, 
  • Shoshana M. Rosenberg, 
  • Maria Cecilia González-Robledo, 
  • Julia G. Cohn, 
  • Cynthia Villarreal-Garza, 
  • Ann H. Partridge, 
  • Felicia M. Knaul
PLOS
x

Abstract

Objective

Young breast cancer survivors in Mexico face distinct psychosocial challenges that have not been characterized. This study aims to describe the psychosocial needs of young breast cancer survivors in Mexico at 5 or more years of survivorship, identifying areas of focus for early interventions.

Methods

Breast cancer patients diagnosed at age 40 or prior with 5 or more years since diagnosis were invited to participate in one-on-one 30–60 minute semi-structured audio-recorded interviews at the Instituto Nacional de Cancerología in Mexico City. Transcripts were coded using thematic analysis with NVivo software.

Results

25 women participated. Five major phenomena emerged from analysis: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs.

Conclusions

Early interventions with a focus on fertility loss education, access to reconstructive surgery and body image support, guidance during return-to-work, assistance with childcare, integration of psychological care and the fulfillment of informational needs could ameliorate long-term psychological and social distress for young breast cancer survivors in Mexico.

Introduction

Breast cancer (BC) is the leading cause of cancer mortality and morbidity among women in Mexico and Latin America with 20,444 new cases in Mexico and 152,059 diagnoses in the region in 2012. [1] The burden is increasing, with BC incidence in low- and middle-income countries rising faster than global incidence. [23] Compared to other regions, the burden of BC in Mexico is disproportionately borne by younger women; mean age at diagnosis is 52, over a decade younger than in the U.S. [4] Younger women experience lower quality-of-life than older patients in the short- and long-term, with increased illness intrusiveness contributing to psychological distress. [56] For young women, diagnosis marks an unexpected shift in life trajectory, often a first experience navigating healthcare, and frequently an isolated one without peers with BC. Compared to older women, young breast cancer survivors (YBCS) are typically more concerned with appearance, more sexually active, and may be in less stable partnered relationships, or seeking a partner. [7] Childbearing plans and professional goals can be disrupted at a critical juncture. [8] Thus, younger women experience BC differently from older women, confronting distinct practical and emotional challenges–challenges which persist years into survivorship.

Several aspects of the health care system in Mexico exacerbate the challenges faced by YBCS. Compounding the inherently more aggressive biologic disease subtypes found in younger women everywhere, delayed diagnosis in Mexico leads to more advanced stage at presentation. [4,9] While 30–40% of BC in the U.S. presents at stage III or IV, this climbs to 50% in Mexico, 58% in Mexican women <40. [1011] Advanced stage necessitates aggressive treatment–more radical surgery, higher dose radiation, and more aggressive chemotherapy and prolonged hormonal therapy–all of which carry side effects. These side effects–lymphedema, premature menopause, vaginal dryness, cognitive impairment–affect body image, fertility, sexual function, and even employment opportunities, areas critical to the psychosocial wellbeing of young women. In Mexico, options to mitigate some of these side effects are limited: women may not have access to reconstruction after mastectomy, and most facilities do not offer fertility conservation. [12]

YBCS in Latin America remain understudied, limiting abilities to develop appropriate support and treatment strategies. Results from high-income countries are not applicable to low- and middle-income countries, both because of varying treatment patterns and variance in menopause onset making definitions of “young” in high-income countries non-generalizable. Additionally, while the impact of cultural norms on the cancer experience is complex and incompletely understood, cultural context can also limit the applicability of results from studies conducted predominantly in non-Latino white populations. [13,14] For example, fatalism, grossly understood as the belief that individual actions are predetermined by fate, has been identified as a dominant belief among Latinos and is believed to act as a barrier to cancer prevention. [15] On the other hand, equal or superior health outcomes in U.S.-resident Hispanics despite significant socioeconomic and sociocultural adversity–the so called “Hispanic Paradox”–may point to an increased reserve capacity, due to resilience factors including social resources, attitudes such as familism, and religiousness. [16] The experiences of Hispanic/Latino U.S. residents cannot be equated with the experiences of women in Mexico, rather these findings highlight the potential impact of cultural norms on the cancer experience and the need for a dedicated assessment of the psychosocial needs of YBCS in Mexico.

As health system improvements in low- and middle-income countries increase access to treatment through programs such as Mexico’s Seguro Popular, care priorities are being actively redefined and meeting the comprehensive needs of cancer survivors is becoming an increasingly achievable and necessary goal. [1723] This exploratory study adds to the sparse literature on YBCS beyond high-income countries by describing the psychosocial complications experienced by YBCS in the upper middle-income country of Mexico. The late-stage complications described here identify areas of focus for early interventions that could spare this population from years of BC-related psychosocial distress.

Materials and methods

Recruitment

Participants were recruited through the National Cancer Institute (Instituto Nacional de Cancerología, INCan), in Mexico City, Mexico. From July 1st to September 19th 2014, patients enrolled in the study “Exploratory study to associate cognitive state, quality of life, and psychosocial aspects with age in breast cancer survivors” with consecutive medical appointments at INCan were invited in-person by investigators to participate in interviews after their appointments. Eligibility criteria were: female sex, prior diagnosis of stage I-III BC, no known metastases, 5+ years since diagnosis, and age at diagnosis <41. Age cut off was chosen to define a group premenopausal at diagnosis. Comparable studies define “young” as <50 at diagnosis which isolates a premenopausal population in the U.S. (where average age at menopause is 51), but would create a heterogeneous group in Mexico City (where average age at menopause is 46). [2426] Patients were required to be 5+ years from diagnosis in order to facilitate identification of issues intractable to the survivors’ processes of adjustment and adaptation, as well as to identify later onset psychosocial issues that may arise in the setting of decreased emotional support and narrowing social circles at this point in survivorship. [2729] Participants were not compensated. The Institutional Review Board of Harvard Medical School (IRB14-1094) and the INCan Ethics and Research Committee approved this study.

Procedures

Basic demographic and clinical information was obtained from medical records. Participants provided written informed consent and were invited to decline digital audio recording. One-on-one semi-structured interviews were 30–60 minutes long, conducted by one of two female interviewers trained in qualitative interviewing (authors HGH & MGR) in private rooms at INCan. Participants were not acquainted with interviewers prior to interview. The topic guide was developed in collaboration with medical and psycho-oncologists from INCan and informed by exploratory interviews with two young breast cancer survivors (one previously treated at INCan) that were used to generate provisional questions. Open-ended questions were designed to solicit personal illness narratives in keeping with existing literature describing the importance of the patient as a narrative subject and narrative performer. [3031] The interview guide underwent forward- and back-translation. Data collection was stopped at theoretical saturation. [32]

Analysis

Audio recordings were transcribed verbatim in Spanish and de-identified by health professionals from Mexico (AABG, CM, JG, RBC, CS, and LOL). Analysis was a multistage process following steps outlined by Strauss and Corbin employing an inductive approach using grounded theory due to the lack of prior literature in this population. [3233] First, line-by-line review was undertaken by two independent coders using NVivo 10 for Mac (QRS International) to code text fragments in Spanish and identify salient concepts. This was followed by an inductive process of reduction, relation, and abstraction of these concepts using constant and theoretical comparison to establish finely differentiated categories and subcategories organizing concepts. Subsequently, axial coding was used to explore relationships between categories and to relate inductively derived categories to the literature on YBCS. During axial coding, investigators related categories and subcategories at the level of properties and dimensions to create conceptual links and generate hypotheses about the relationships between categories. Coding discrepancies were discussed by coders and resolved by consensus. Ultimately, select categories with associated phenomena felt to be highly impactful for the wellbeing of the study population were chosen for presentation in this manuscript. Select quotes were back-translated to English for inclusion in this manuscript by an independent translator who grew up speaking English and Spanish as co-primary languages (LC).

Results

Out of a total of 29 women approached, 25 women (86%) were consented to participate in this study. For interviewee demographic and clinical information see Table 1. During inductive coding, five major phenomena emerged: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs. Each of these phenomena will be discussed below.

Category 1: Fertility

Eleven women reported that they desired more children at diagnosis. Of these 11, six had children prior to diagnosis; five did not. None of these 11 women went on to have children after diagnosis: five did not resume menstruation after treatment, one underwent hysterectomy during treatment, and five described decisions to forgo conception, citing reasons including concerns for a child’s wellbeing (in general and risk of breast cancer) and prioritization of personal health. Study participants rarely independently brought up fertility during interviews; when asked, women did not recount balancing the desire for fertility with survival at any phase of survivorship. When directly questioned about reproductive concerns, patients explained that during diagnosis and treatment their survival took such precedence as to overshadow any thoughts about fertility (see Table 2). Later in survivorship some women described regret and difficulty accepting the reality of infertility. Patients were fearful to broach the topic with providers and not a single woman could recall their physician bringing up fertility in a way that led to a meaningful, informative discussion. Those who did discuss fertility with a physician described conversations limited to warnings to not get pregnant during chemotherapy. Women provided several rationales for this lack of discussion: some felt their fertility concerns could not alter treatment decisions, others emphasized that health took precedence over fertility preservation.

Category 2: Body image and intimate partner relationships

Body image narratives were notable for their distinct shapes over time (see Table 3). Some described an initial ‘blow’ to their body image followed by slow adaptation, while others denied body image disturbance at any point. Seven women reported active disturbance at interview including persistent distress since treatment, improvement without complete normalization, and emergence of distress years into survivorship. Active disturbance manifested as a complete loss of interest in appearance or fixation and distress, often pervasive, precluding patients from moving beyond BC. Positive adaptation was often mediated by family members or intimate partners. Specifically, partners provided reassurance that the loss of a breast had no bearing on the couple’s physical or emotional relationship and respect for the woman’s desires pertaining to intimacy. Adaptation narratives often culminated in finding new completeness, or appreciating one’s abilities, framed in reference to those who had lost more, or using a ‘losing x’ versus death dichotomy to minimize loss. Some saw reconstruction as the only way to move on. The five women who did receive reconstruction expressed satisfaction with their physical appearance at interview. Strikingly, one woman reported being told that reconstruction was mandatory due to her young age. Reasons for not undergoing reconstruction after mastectomy included prohibitive expense, risk of infection, poor cosmetic outcomes or reconstruction ‘causing’ recurrence, and uncertainty about how to pursue the procedure.

While many women reported that BC had no effect on their intimate partner relationship, some reported improvement or worsening (see Table 4). One woman’s spouse abandoned her at diagnosis. Many women described increased intimacy and affection as well as appreciation for the lack of social constraint placed upon them by their partners. Withholding intimacy was both a means of rejection and support. Across the spectrum of spousal support, women recognized difficulty talking about cancer. Often this improved with time. Attitudes about dating also evolved over time. Many women single at the time of interview expressed reservations about dating: beginning a new intimate relationship required explaining mastectomy scars, disrupting the façade of ‘normalcy’ women had worked hard to create and protect. Notably, one woman said she could not date because she could not find a partner who would help with illness expenses.

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Table 4. Quotations representative of Subcategory 2b: Intimate partners.

https://doi.org/10.1371/journal.pone.0197931.t004

Category 3: Employment

Speaking about employment, many women mentioned their children: emphasizing their financial need in terms of dependent children, or describing time occupied by work as taking away parent-child time in the setting of an uncertain future. Patients who took time off work during treatment described their leave as a necessity due to medical appointments, fatigue, or type of work. Patients who continued work throughout treatment unanimously described work as a support–a refuge, useful distraction, or source of normalcy. Of note, three of the four women who were able to continue working through treatment were self-employed. The fourth worked in the formal economy with flexible hours and generous accommodations. Additionally, four women transitioned from the formal to informal workforce after BC. Women employed by family or friends described being able to openly explain their needs and limitations.

Women who had difficulty finding employment after BC described two barriers: lack of accommodation for absences for medical visits and new physical limitations. While many described implicit pressure to not take days off for medical visits, several described overt declarations prohibiting such absences. Several women left housecleaning or factory jobs to avoid heavy lifting after axillary dissections. In particular, patients lacking the education required for non-manual labor jobs described the profound effects of new physical limitations, feeling they had few options left. Many interviewees perceived more general hiring discrimination on the basis of their BC history. Women gave numerous motives for discrimination, namely that employers thought they were not strong enough to work, that they would get sick again, or were there for insurance benefits. Perceived discrimination translated into fear of disclosure: several women chose not to inform prospective employers about their cancer history (see Table 5).

Category 4: Family and social networks

Concern for children and family members, often supplanting concern for self, was a common narrative (see Table 6). During early illness, physical separation of families resulted in significant strain. Separation resulted from women from rural areas moving to Mexico City for treatment or from husbands moving away to send back funds. Patients who commuted to and from treatment, particularly single mothers or women without spousal support, were stressed by having to leave young children (or elderly parents) waiting outside during treatments. Other sources of stress related to children were fear that daughters would get BC and uncertainty regarding what, when, and how to tell children about BC. Many women found ways to conceal their illness experience from children. Yet often women were surprised by how well their children reacted. Older children stepped up to care for siblings and a traditional arrangement with the mother responsible for all household tasks in several cases yielded to a more equal division of labor between all family members, persisting even after the mother recovered from treatment.

Beyond family, many found that illness permanently narrowed their social circles to ‘true’ friends only (see Table 7). Two woman described becoming very socially isolated post treatment. And while one interviewee denied the existence of stigma, most experienced stigma from their community in some form: several women encountered people who thought cancer was contagious. Women presented opposing attitudes about partaking in the BC patient community: some shied away from other patients in an effort to view their experience as distinct while others found strength communing with other patients. Interestingly, many felt strongly compelled to assume the role of “patient advocate” as part of a new identity in recovery. Many knew peers who had passed away, and these deaths often informed personal survivorship identity, either as cause to reject or embrace the label of ‘survivor’.

Category 5: Psychological care and informational needs

Many women spoke of an unmet need for psychological care (see Table 8). Two recounted suicidal thoughts: one passive, one with active ideation and plan. Some women described intense anxiety during the transition to survivorship care as they received less frequent visits and scans, worrying that their disease would come back, undetected. Additionally with yearly appointments, women felt out of touch with support groups and other programs at the hospital. In contrast, other women described repulsion to the hospital, vomiting as they entered, or feeling unable to walk through the door. The two patients who saw psychiatrists described immense benefit, even from very few sessions. Barriers to receiving psychological care included cost, time, and uncertainty about how to find a provider.

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Table 8. Quotations representative of Subcategory 5a: Psychological care.

https://doi.org/10.1371/journal.pone.0197931.t008

Notably, the one patient with active suicidal ideation described her motivation in terms of information deficit: desperation rooted in a lack of understanding of what medicine could do for her. In general, patients reported that unmet informational needs contributed to their anxiety. They desired more information on topics including navigating the hospital’s administrative process, reconstruction, nutrition, lifestyle, where to seek non-oncological care, and side effects such as lymphedema and hormonal changes (see Table 9). While the majority of informational needs pertained to early survivorship, patients also identified needs later on (e.g. where to seek gynecologic care fifteen years out). Patients frequently described filling information gaps with rumors heard in the waiting room. The representative quotations in Table 9 provide a sense of the breadth of topics women desired more information about and the extent to which women felt having more information would ameliorate their distress.

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Table 9. Quotations representative of Subcategory 5b: Informational needs.

https://doi.org/10.1371/journal.pone.0197931.t009

Overall, the categories presented above–fertility, body image & intimate partner relationships, employment, family & social networks, and psychological care & informational needs–organize important concepts expressed by this group of YBCS in Mexico relating to their psychosocial wellness, which we will now attempt to situate within the YBCS literature, generating suggestions for the survivorship care of this growing population.

Discussion

Fertility

The most prominent finding pertaining to fertility was, in fact, the category’s lack of prominence. [3436] We attribute this to several factors. First, regional discrepancies in average maternal age result in fewer patients in Mexico with zero children at diagnosis and thus more moderate infertility-related distress than what is reported from high-income countries. [37] Second, in the setting of low- and middle-income countries where survival may be less presumed, a survival-first mentality overshadows fertility concerns. [38] A third factor is patient-physician dynamics. Patient accounts here are consistent with suboptimal rates of fertility discussion by physicians as documented in a prior study in Mexico as well as in the U.S., and globally. [12,3940] The belief expressed here that fertility concerns could not influence treatment choices could be due to inadequate information provision by physicians, or poor recall of patient-physician conversations. Of note, a significant minority (8–29%) of BC patients choose less aggressive treatment in favor of fertility preservation, demonstrating knowledge of–and engagement in–treatment choices that was not described in this cohort. [36,41] Finally, minimization of fertility concerns can aid in coping. [34,42] Yet, minimization should not be equated with true lack of impact on the survivorship experience. In fact, minimization of fertility concerns coexisted here with infertility-related depressive symptoms and distress persisting years into survivorship. [43]

Body image and intimate partner relationships

The persistent, severe, body image-related distress seen in this cohort lasting years into survivorship is unfortunately not a novel finding. [4445] However, it remains concerning, particularly in light of the strong correlation between poor body image and depression in Mexican women. [46] The qualitative design of this study allowed insight into the wide range of trajectories of body image perception over time, and provides some clues about what can steer that course. [47] The phenomenon of family positively mediating body image seems overrepresented in these experiences compared to survivors in other countries, which may be due to the distinct cultural role of the wife/mother in Mexico. [4849] The lower body image satisfaction and elevated distress seen here among women who desired but could not receive reconstruction is consistent with findings of YBCS literature from high-income countries. [50] While our findings highlight limited access to reconstruction due to expense and process uncertainty, they also illustrate the complexity of decision-making surrounding reconstruction, with women weighing numerous concerns (e.g. infection risk, poor cosmetic outcome, sense of wholeness).

With regard to intimate partners, while the interdependent distress, anxiety, poor communication and even outright emotional and physical abandonment presented here cannot be ignored, stories of intimate partner relationships were largely remarkable for their resiliency and growth. [5154] In contrast, we did not find any examples of dating as a positive experience capable of restoring self and bodily esteem, which has been described in the literature. [7,55] While this absence could be due to small sample size, it could also be reflective of cultural factors modulating the profoundly vulnerable experience of physically and verbally revealing a BC history to a new partner.

Employment

Participants’ attitudes regarding return-to-work experiences largely matched findings in the international literature. Echoing respondents in European and U.S. studies, most participants in this study characterized working as a coping strategy, providing a sense of purpose and normalcy. [56] In contrast, the women who reported valuing work less as they came to view working as time not spent with their children exhibited a reprioritization of work-life balance that has also been documented in BC scholarship. [8] However, it is important to note that in this cohort, the lasting financial impact of BC made de-prioritization of work impossible for many women.

In contrast to the concerns about unaccommodating workplaces and perceived discrimination seen here, most studies in the U.S. and Europe report accommodating supervisors and supportive work environments. [57] However, analyses in high-income countries focusing on weak workplace support do show that employer sensitivity, employer-employee communication, and perceived willingness of the employer to accommodate needs can affect whether or not women return to work after a BC-related absence. [5859] In this study, concerns about absences for medical appointments often precluded women from getting jobs in the first place. Mexico’s large informal economy (22.6% of GDP in 2016) seems to have provided additional employment opportunities and flexibility for some women. [60] However, the informal sector, largely a manual labor sphere, does not offer a solution for all YBCS. The disproportionate difficulty of returning to work for lower income, less educated survivors, for whom new physical limitations precluding manual labor can be devastating, were particularly well-illustrated in our study. [61]

Family and social networks

Social relationships dominated patient narratives both in terms of the frequency of mention and length of discussion and women frequently equated social wellbeing with overall wellbeing. [62] In general, young children were focal to the experiences of these YBCS be it as sources of anguish or strength. Women employed all three of Adam’s coping strategies grappling with raising young children during illness, most unique to this population being the ‘balancing’ act of needing to travel far away for treatment and not wanting to be apart from young children at such a time. [34] Patients’ concern for family above self became a means of ‘normalizing’: holding on to a provider role instead of transitioning to a self-focused ‘sick role’. [63] And while women normalized family interactions in the emotional domain, they described permitting, and benefiting from, a more pragmatic ‘change’ process: long-term redistribution of household chores.

In contrast, beyond the household, we found predominantly negative perspectives on how broader social circles interacted with women’s BC experience: narrowing of social circles, social isolation, and fear of disclosing BC status. [6465] Stories of social isolation reported here are valuable in their depiction of the complete aloneness some patients find themselves in after treatment, something not well understood through the quantitative literature. It is interesting that the desire to become a mentor figure to other patients was very prevalent in this group. This adds to the literature’s emphasis on patients’ desires for mentorship during treatment, and could represent a ‘changing’ process; as women adapt to survivorship, becoming a mentor to other patients gives positive, new, meaning to broader social interactions. [66]

Psychological care and informational needs

While depressive symptoms have been shown, in general, to taper with time from diagnosis, younger women are at higher risk of long-term depression, as exemplified by the pervasive anguish present at 5+ years survivorship. [6,67] As seen here and in the literature, the transition to survivorship can be a period of elevated psychological distress. [68] Studies in the U.S. show that Latinos underutilize mental health services in comparison to other ethnic groups, often attributing this to the stigmatization of mental health (e.g. saying ‘nervios’ to refer to mental health problems in order to avoid ‘socially damaging’ clinical diagnoses like depression or anxiety). [69] While evidence from Mexico is lacking and the generalizability of findings in Latinos is debatable, it is notable that several patients here explicitly argued for more integration of psychological care, suggesting that, in some cases, patients would readily embrace, not shy away from, such services if they were made more available.

Causes of the information deficits observed here include inadequate communication with healthcare providers, as well as a deficiency of written and electronic information on issues faced by young patients, such as fertility preservation, genetic counseling, and treatment side effects. [70]

Limitations

While our participation rate was high, non-response bias could still have led to missed perspectives. Furthermore, the survival bias inherent in interviewing only women without recurrence at 5+ years survivorship means that our results do not describe the experiences of women who may recur early in their survivorship. Additionally, and importantly, while speaking to women at 5+ years after diagnosis gave critical insight into women’s understanding and narration of their survivorship experience at a potentially reflective point and allowed identification of needs persistent in late survivorship, asking these women about experiences they had years prior introduces recall bias and undoubtedly overlooks acute psychosocial needs that YBCS confront in the immediate post-treatment period. Finally, in order to solicit longitudinal narratives of survivorship and adaptation processes, our interview guide directly asked about “changes,” possibly at the cost of minimizing narratives of consistency of experience over time.

Conclusions

In light of the recent implementation of universal health coverage in Mexico with Seguro Popular, and the subsequent expansion of access to early diagnosis and treatment of BC, we see an opportunity for the development of a national plan for BC control, one including comprehensive supportive care integrating early palliative and psychosocial interventions to prevent complications later in survivorship. This study’s rich qualitative view into the challenges of Mexico’s YBCS over time points to several important components of such an intervention.

First, we suggest emphasizing early discussion of fertility loss, ideally pre-treatment. Patients must be made aware of the possible impact of treatment on fertility regardless of limited options available for fertility preservation on site. Providers discussing fertility with YBCS should keep in mind the often transient survival-first mentality of early phase survivors as well as patients’ fear of bringing up fertility-related concerns. Ultimately, steps should be taken to ensure that physicians are equipped to adequately discuss fertility and that patients and survivors feel informed after these conversations. Second, available financial assistance should be used to make reconstructive surgery more broadly accessible and emphasis placed on thoroughly addressing patient concerns about surgical treatment and honoring informed patient choice. All patients, particularly those denied reconstruction, should be invited to participate in interventions targeting body image early in treatment. Third, occupational therapy programs and educational materials on employment after BC should be provided, especially to women previously employed in manual labor with a financial imperative to return to work. Further work is needed to assess and address possible employment discrimination against cancer survivors in Mexico. Fourth, day care programs at cancer centers and/or family transportation and lodging should be provided (as financially possible) to minimize distress related to physical separation from children and elder relatives during treatment.

Finally, mental health care, currently not part of oncologic care in Mexico, must be integrated into, and emphasized, in survivorship care. Formal assessment and therapy with psycho-oncologists should be routine. Additionally, we strongly believe in the benefit of survivor-advocate programs, designed to address both emotional and informational needs. Such programs can improve the social, psychological and even financial wellbeing of survivors both in the roles of mentees and mentors. Women may be more willing to ask questions, and more able to retain information in the setting of a peer group than in their doctor’s office. And by creating a social space where the YBCS experience is normalized, such groups can provide a forum for healthy processing of many of the concepts presented above, guard against the complete social isolation reported here, and enable YBCS not only to tell their BC story, but to shape their story and use it: “so that they can see in me that one can survive”.

Acknowledgments

We extend our gratitude to the women who participated in interviews, generously sharing intimate stories of their YBCS experiences. In particular we thank Abish Romero and Laura Torres for providing feedback on the interview topic guide. Many thanks to Alejandra Platas, Dr. Christian Aguila, Ana Araceli Burgos Gonzáles, César Márquez, Jaime Hidalgo, Regina Barragán Carrillo, Cintia Sepulveda, and Laura Ortega Leonard, for help with patient recruitment and interview transcription. Thanks to Lourdes Castillo for translation and to Michael Joseph Graybeal and Dr. Héctor Arreola Ornelas for their essential support.

References

  1. 1. Ferlay J, Soerjomataram I, Ervik M, Dikshit R, Eser S, Mathers C et al. GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase. International Agency for Research on Cancer. 2013;1: 11. Available from: http://globocan.iarc.fr.
  2. 2. Justo N, Wilking N, Jönsson B, Luciani S, Cazap E. A review of breast cancer care and outcomes in Latin America. Oncologist. 2013;18(3):248–56. pmid:23442305
  3. 3. Shulman LN, Willett W, Sievers A, Knaul FM. Breast cancer in developing countries: opportunities for improved survival. J Oncol. 2010;2010:595167. pmid:21253541
  4. 4. Villarreal-Garza C, Aguila C, Magallanes-Hoyos MC, Mohar A, Bargalló E, Meneses A, et al. Breast cancer in young women in latin america: an unmet, growing burden. Oncologist. 2013;18 Suppl:26–34. pmid:24334479
  5. 5. Howard-Anderson J, Ganz PA, Bower JE, Stanton AL. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Natl Cancer Inst. 2012;104(5):386–405. pmid:22271773
  6. 6. Avis NE, Levine B, Naughton MJ, Case LD, Naftalis E, Van Zee KJ. Age-related longitudinal changes in depressive symptoms following breast cancer diagnosis and treatment. Breast Cancer Res Treat. 2013;139(1):199–206. pmid:23588951
  7. 7. Ruddy KJ, Greaney ML, Sprunck-Harrild K, Meyer ME, Emmons KM, Partridge AH. Young Women with Breast Cancer: A Focus Group Study of Unmet Needs. J Adolesc Young Adult Oncol. 2013;2(4):153–60. pmid:24380034
  8. 8. Raque-Bogdan TL, Hoffman MA, Ginter AC, Piontkowski S, Schexnayder K, White R. The work life and career development of young breast cancer survivors. J Couns Psychol. 2015;62(4):655–69. pmid:25751018
  9. 9. Freedman RA, Partridge AH. Management of breast cancer in very young women. Breast. 2013;22 Suppl 2:S176–9.
  10. 10. Miller KD, Siegel RL, Lin CC, Mariotto AB, Kramer JL, Rowland JH, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66(4):271–89. pmid:27253694
  11. 11. Villarreal-Garza C, Mohar A, Bargallo-Rocha JE, Lasa-Gonsebatt F, Reynoso-Noverón N, Matus-Santos J, et al. Molecular Subtypes and Prognosis in Young Mexican Women With Breast Cancer. Clin Breast Cancer. 2016.
  12. 12. Villarreal-Garza C, Martinez-Cannon BA, Platas A, Mohar A, Partridge AH, Gil-Moran A, et al. Fertility concerns among breast cancer patients in Mexico. Breast. 2017;33:71–5. pmid:28284061
  13. 13. Ashing-Giwa KT, Padilla G, Tejero J, Kraemer J, Wright K, Coscarelli A et al. Understanding the breast cancer experiences of women: A qualitative study of African American, Asian American, Latina and Caucasian cancer survivors. Psychooncology. 2004;13(6):408–428 pmid:15188447
  14. 14. Adams E, McCann L, Armes J, Richardson A, Stark D, Watson E, et al. The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography. Psychooncology. 2011;20(8):851–61. pmid:20597066
  15. 15. Espinosa de Los Monteros K, Gallo LC. The relevance of fatalism in the study of Latinas' cancer screening behavior: a systematic review of the literature. Int J Behav Med. 2011;18(4):310–318. pmid:20953916
  16. 16. Gallo LC, Penedo FJ, Espinosa de los Monteros K, Arguelles W. Resiliency in the face of disadvantage: do Hispanic cultural characteristics protect health outcomes? J Pers. 2009;77(6):1707–1746. pmid:19796063
  17. 17. Knaul FM, González-Pier E, Gómez-Dantés O, et al. The quest for universal health coverage: achieving social protection for all in Mexico. Lancet. 2012;380(9849):1259–1279. pmid:22901864
  18. 18. Chávarri-Guerra Y, Villarreal-Garza C, Liedke PE, et al. Breast cancer in Mexico: a growing challenge to health and the health system. Lancet Oncol. 2012;13(8):e335–343. pmid:22846838
  19. 19. Lokody I, Collingridge D. Latin America: rising to the challenge of cancer control. Lancet Oncol. 2015;16(14):1399–1400. pmid:26522153
  20. 20. Strasser-Weippl K, Chavarri-Guerra Y, Villarreal-Garza C, et al. Progress and remaining challenges for cancer control in Latin America and the Caribbean. Lancet Oncol. 2015;16(14):1405–1438. pmid:26522157
  21. 21. Ilbawi AM, Ayoo E, Bhadelia A, et al. Advancing access and equity: the vision of a new generation in cancer control. Lancet Oncol. 2017;18(2):172–175. pmid:28214406
  22. 22. Ganz PA, Yip CH, Gralow JR, et al. Supportive care after curative treatment for breast cancer (survivorship care): resource allocations in low- and middle-income countries. A Breast Health Global Initiative 2013 consensus statement. Breast. 2013;22(5):606–615. pmid:24007941
  23. 23. Kaasa S, Knaul FM, Mwangi-Powell F, Rodin G. Supportive care in cancer: new directions to achieve universal access to psychosocial, palliative, and end-of-life care. Lancet Glob Health. 2018;6:S11–12.
  24. 24. Avis NE, Crawford S, Manuel J. Psychosocial problems among younger women with breast cancer. Psychooncology. 2004;13(5):295–308. pmid:15133771
  25. 25. Gold EB. The timing of the age at which natural menopause occurs. Obstet Gynecol Clin North Am. 2011;38(3):425–40. pmid:21961711
  26. 26. Garrido-Latorre F, Lazcano-Ponce EC, López-Carrillo L, Hernández-Avila M. Age of natural menopause among women in Mexico City. Int J Gynaecol Obstet. 1996;53(2):159–66. pmid:8735297
  27. 27. Bloom JR, Stewart SL, Chang S, Banks PJ. Then and now: quality of life of young breast cancer survivors. Psychooncology. 2004;13(3):147–160. pmid:15022150
  28. 28. Bloom JR, Stewart SL, D'Onofrio CN, Luce J, Banks PJ. Addressing the needs of young breast cancer survivors at the 5 year milestone: can a short-term, low intensity intervention produce change? J Cancer Surviv. 2008;2(3):190–204. pmid:18670888
  29. 29. Mallinger JB, Griggs JJ, Shields CG. Family communication and mental health after breast cancer. Eur J Cancer Care (Engl). 2006;15(4):355–361.
  30. 30. Charon R. Narrative and medicine. N Engl J Med. 2004;350(9):862–864. pmid:14985483
  31. 31. Frank AW. From sick role to narrative subject: An analytic memoir. Health (London). 2016;20(1):9–21.
  32. 32. Strauss A, Corbin J. Basics of qualitative research: techniques and procedures for developing Grounded Theory. Thousand Oaks, CA: Sage; 1998.
  33. 33. Neuendorf KA. The content analysis guidebook. Thousand Oaks, CA: Sage; 2001.
  34. 34. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313(4):270–3.
  35. 35. Ruddy KJ, Gelber SI, Tamimi RM, Ginsburg ES, Schapira L, Come SE, et al. Prospective study of fertility concerns and preservation strategies in young women with breast cancer. J Clin Oncol. 2014;32(11):1151–6. pmid:24567428
  36. 36. Corney RH, Swinglehurst AJ. Young childless women with breast cancer in the UK: a qualitative study of their fertility-related experiences, options, and the information given by health professionals. Psychooncology. 2014;23(1):20–6. pmid:24038590
  37. 37. Lee RJ, Wakefield A, Foy S, Howell SJ, Wardley AM, Armstrong AC. Facilitating reproductive choices: the impact of health services on the experiences of young women with breast cancer. Psychooncology. 2011;20(10):1044–52. pmid:20818600
  38. 38. Vadaparampil ST, Christie J, Quinn GP, Fleming P, Stowe C, Bower B, et al. A pilot study to examine patient awareness and provider discussion of the impact of cancer treatment on fertility in a registry-based sample of African American women with breast cancer. Support Care Cancer. 2012;20(10):2559–64. pmid:22270090
  39. 39. Banerjee R, Tsiapali E. Occurrence and recall rates of fertility discussions with young breast cancer patients. Support Care Cancer. 2016;24(1):163–71. pmid:25967235
  40. 40. Senkus E, Gomez H, Dirix L, Jerusalem G, Murray E, Van Tienhoven G, et al. Attitudes of young patients with breast cancer toward fertility loss related to adjuvant systemic therapies. EORTC study 10002 BIG 3–98. Psychooncology. 2013.
  41. 41. Ahmad S, Fergus K, McCarthy M. Psychosocial issues experienced by young women with breast cancer: the minority group with the majority of need. Curr Opin Support Palliat Care. 2015;9(3):271–8. pmid:26147915
  42. 42. Gorman JR, Malcarne VL, Roesch SC, Madlensky L, Pierce JP. Depressive symptoms among young breast cancer survivors: the importance of reproductive concerns. Breast Cancer Res Treat. 2010;123(2):477–85. pmid:20130979
  43. 43. Falk Dahl CA, Reinertsen KV, Nesvold IL, Fosså SD, Dahl AA. A study of body image in long-term breast cancer survivors. Cancer. 2010;116(15):3549–57. pmid:20564138
  44. 44. Champion VL, Wagner LI, Monahan PO, Daggy J, Smith L, Cohee A, et al. Comparison of younger and older breast cancer survivors and age-matched controls on specific and overall quality of life domains. Cancer. 2014;120(15):2237–46. pmid:24891116
  45. 45. Aguilar Cordero MJ, Mur Villar N, Neri Sánchez M, Pimentel-Ramírez ML, García-Rillo A, Gómez Valverde E. Breast cancer and body image as a prognostic factor of depression: a case study in México City. Nutr Hosp. 2014;31(1):371–9. pmid:25561132
  46. 46. Zimmermann T, Scott JL, Heinrichs N. Individual and dyadic predictors of body image in women with breast cancer. Psychooncology. 2010;19(10):1061–8. pmid:19950218
  47. 47. Fang SY, Chang HT, Shu BC. The moderating effect of perceived partner empathy on body image and depression among breast cancer survivors. Psychooncology. 2015.
  48. 48. Walsh SR, Manuel JC, Avis NE. The Impact of Breast Cancer on Younger Women's Relationships With Their Partner and Children. Families, Systems, & Health. 2011:23(1):80–93.
  49. 49. Rowland JH, Desmond KA, Meyerowitz BE, Belin TR, Wyatt GE, Ganz PA. Role of breast reconstructive surgery in physical and emotional outcomes among breast cancer survivors. J Natl Cancer Inst. 2000;92(17):1422–9. pmid:10974078
  50. 50. Segrin C, Badger TA. Psychological and physical distress are interdependent in breast cancer survivors and their partners. Psychol Health Med. 2014;19(6):716–23. pmid:24383980
  51. 51. Manne S, Kashy DA, Siegel S, Myers Virtue S, Heckman C, Ryan D. Unsupportive partner behaviors, social-cognitive processing, and psychological outcomes in couples coping with early stage breast cancer. J Fam Psychol. 2014;28(2):214–24. pmid:24611691
  52. 52. Borstelmann NA, Rosenberg SM, Ruddy KJ, Tamimi RM, Gelber S, Schapira L, et al. Partner support and anxiety in young women with breast cancer. Psychooncology. 2015.
  53. 53. Loaring JM, Larkin M, Shaw R, Flowers P. Renegotiating sexual intimacy in the context of altered embodiment: the experiences of women with breast cancer and their male partners following mastectomy and reconstruction. Health Psychol. 2015;34(4):426–36. pmid:25822057
  54. 54. Kurowecki D, Fergus KD. Wearing my heart on my chest: dating, new relationships, and the reconfiguration of self-esteem after breast cancer. Psychooncology. 2014;23(1):52–64. pmid:24038654
  55. 55. Tiedtke C, de Rijk A, Dierckx de Casterlé B, Christiaens MR, Donceel P. Experiences and concerns about 'returning to work' for women breast cancer survivors: a literature review. Psychooncology. 2010;19(7):677–83. pmid:19823971
  56. 56. Bouknight RR, Bradley CJ, Luo Z. Correlates of return to work for breast cancer survivors. J Clin Oncol. 2006;24(3):345–53. pmid:16421415
  57. 57. Lindbohm ML, Kuosma E, Taskila T, Hietanen P, Carlsen K, Gudbergsson S, et al. Early retirement and non-employment after breast cancer. Psychooncology. 2014;23(6):634–41. pmid:24347387
  58. 58. Yarker J, Munir F, Bains M, Kalawsky K, Haslam C. The role of communication and support in return to work following cancer-related absence. Psychooncology. 2010;19(10):1078–85. pmid:20014202
  59. 59. Blinder V, Patil S, Eberle C, Griggs J, Maly RC. Early predictors of not returning to work in low-income breast cancer survivors: a 5-year longitudinal study. Breast Cancer Res Treat. 2013;140(2):407–16. pmid:23884596
  60. 60. Medición De La Economía Informal [Internet] National Institute of Statistics and Geography, Mexico, 2015 [cited 14 May 2018]. Available from: http://www.inegi.org.mx/est/contenidos/proyectos/cn/informal/
  61. 61. Götze H, Ernst J, Brahler E, Romer G, von Klitzing K. Predictors of quality of life of cancer patients, their children, and partners. Psychooncology. 2015;24(7):787–95. pmid:25488818
  62. 62. Mackenzie CR. 'It is hard for mums to put themselves first': how mothers diagnosed with breast cancer manage the sociological boundaries between paid work, family and caring for the self. Soc Sci Med. 2014;117:96–106. pmid:25063965
  63. 63. Salonen P, Tarkka MT, Kellokumpu-Lehtinen PL, Koivisto AM, Aalto P, Kaunonen M. Effect of social support on changes in quality of life in early breast cancer patients: a longitudinal study. Scand J Caring Sci. 2013;27(2):396–405. pmid:22834764
  64. 64. Peters-Golden H. Breast cancer: varied perceptions of social support in the illness experience. Soc Sci Med. 1982;16(4):483–91. pmid:7079803
  65. 65. Snyder KA, Pearse W. Crisis, social support, and the family response: exploring the narratives of young breast cancer survivors. J Psychosoc Oncol. 2010;28(4):413–31. pmid:20623416
  66. 66. Burgess C, Cornelius V, Love S, Graham J, Richards M, Ramirez A. Depression and anxiety in women with early breast cancer: five year observational cohort study. BMJ. 2005;330(7493):702. pmid:15695497
  67. 67. Mollica M, Nemeth L. Transition from patient to survivor in African American breast cancer survivors. Cancer Nurs. 2015;38(1):16–22. pmid:24406383
  68. 68. Carpenter-Song E, Chu E, Drake RE, Ritsema M, Smith B, Alverson H. Ethno-cultural variations in the experience and meaning of mental illness and treatment: implications for access and utilization. Transcult Psychiatry. 2010;47(2):224–51. pmid:20603387
  69. 69. Partridge AH. Cancer survivorship and the young breast cancer patient: addressing the important issues. Oncologist. 2013;18(8):e19–20. pmid:23986342
  70. 70. Villarreal-Garza C, Platas A, Martinez-Cannon BA, Bargalló-Rocha E, Aguilar-González CN, Ortega-Leonard V, et al. Information Needs and Internet Use of Breast Cancer Survivors in Mexico. Breast J. 2016.