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

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 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. [17][18][19][20][21][22][23] 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.

Recruitment
Participants were recruited through the National Cancer Institute (Instituto Nacional de Cancerología, INCan), in Mexico City, Mexico. From July 1 st to September 19 th 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). [24][25][26] 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. [27][28][29] 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. Oneon-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. [30][31] The interview guide underwent forward-and back-translation. Data collection was stopped at theoretical saturation. [32] following steps outlined by Strauss and Corbin employing an inductive approach using grounded theory due to the lack of prior literature in this population. [32][33] First, line-byline 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.

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 treat-  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 Table 5. Quotations representative of Category 3: Employment.

Concept Quote (participant #)
Working throughout as helpful (7) [What was your biggest support?] "I took refuge in work, I just worked." (17)  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  (14) "The young ladies of the 'Challenges' group taught us many good things. Truthfully, they did help me a lot spiritually, with the strength, will, and discipline that one needs to get out of that hole into which so many of us fall." Identity as a patient advocate (14)  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  (21) "I come from very far away and then they do nothing else but review the tests we were sent to do and a physical exam and that's it. It would make us feel more confident if they did a little more." (10) "I felt a little anxious, anguished. Because I'm thinking, 'They're not treating me like they used to treat me. The disease is going to come back and I won't know.' Why? Because I'm not going to the doctor every eight days. I'm not going to get checked on. Yes, it gave me anguish and I felt so worried. Because they gave me appointments every month, then two months, then three months, four, five and now six. So now I go every six months and I still feel distressed by the same thing that I was seen more often and not anymore. The anguish is for everything. Even if we say, 'We are healed, we are cured of the disease,' and, 'I am no longer afraid of that,' there is also that possibility, that anguish, biting at us that the disease can come back and can get you, that it isn't going to end." (9) "There should be more help for those of us who, since we are only seen once each year, often we don't know what is available, what new programs there are for us here at the hospital." Distress entering the hospital (8) "It was so bad that when I entered the hospital, it was already starting, Ã retching impression. Ã I hadn't begun my treatment and I was Ã retching impression. Ã It was psychological." Explicit requests for psychological care (4) [Ask for two things from your medical team] "After ten years, after eight, ask the patient how she feels, how she is doing. Above all they should make it like a law that they send in the psychologist with the other consults: chemo, radiation, and a psychologist. Make it the default. I think that is very important because I think my disease really didn't affect me. It really was a small tumor and they got it out and that's it! But, the psychological part. . . The physical effects, well, yes, the chemo gives you a disgusting feeling and you feel bad and all that. But the fear, your family, your children, the morale. . . that hurts terribly. Yes, you should see it as a special department that exists so women are cared for psychologically and have a better quality of life. We are being cured, physically, but what becomes of our minds? How are we psychologically?" 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. 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.
Overall, the categories presented above-fertility, body image & intimate partner relationships, employment, family & social networks, and psychological care & informational needsorganize 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.

Fertility
The most prominent finding pertaining to fertility was, in fact, the category's lack of prominence. [34][35][36] 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 patientphysician 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,[39][40] 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. [44-45] 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 Table 9. Quotations representative of Subcategory 5b: Informational needs.

Concept Quote (participant #)
Non-oncology providers (6) "Well, I can say that when you talk to others who suffered from the same (disease), it generates doubts. Because they tell you that you need to come to this hospital right away for any illness. Actually I was never told that by my doctor, so I get treated elsewhere when it's not related to my cancer. But maybe you should be more careful, for example, with something like pap smears, maybe you should go to someone who is a specialist?" 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.
[48-49] 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. [51-54] 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. [58][59] 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. [64][65] 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 survivoradvocate 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".