Abstract
Background
The experiences, physical and mental health and needs of women with breast cancer have been studied in some detail, but there is a lack of discussion of the experiences of stakeholder groups such as men with breast cancer, partners and carers and healthcare professionals. The aim of this study was to explore and understand the experiences and perceptions of male breast cancer stakeholders from diagnosis through to survivorship.
Methods
We conducted a thematic review of qualitative studies included in a large published scoping review on male breast cancer (reported under the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews extension). To be included in a qualitative evidence review, studies had to use qualitative methods for data collection and analysis to capture the perspectives of men with breast cancer, partners or caregivers, and healthcare workers. Key characteristics and findings were extracted and a conceptual coding framework was summarized using thematic analysis.
Results
Out of a total of 310 studies in the research literature (published research articles and gray literature), 15 studies met the inclusion criteria. These studies reported on the experiences of men with breast cancer, partners or caregivers, and healthcare workers, with participant numbers ranging from 2 to 31. A total of 17 descriptive themes (study outcomes) were identified. From these, four high-level analytic themes emerged: (1) Predicament; (2) Emotion; (3) Support; (4) Coping.
Conclusions
The gender stigma that exists at the patient, healthcare system, and family-society levels largely influences the experiences of the male breast cancer stakeholder population. To address gender inequalities in breast cancer care, healthcare organizations and society at large should remain equally attentive to the needs of male and female breast cancer patients. These needs include reducing healthcare and social stigma, providing gender-specific information and emotional support, and access to support groups.
Keywords: Male breast neoplasms, Experiences, Perceptions, Qualitative study
Highlights
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Integrates the experiences and perceptions of MBC stakeholders from diagnosis through survivorship.
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Four high-level themes of analysis were extracted from the final 15 papers: Predicament;Emotion;Support;Coping.
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The gender stigma that exists at all levels largely influences the experiences of the MBC stakeholder population.
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Society as a whole should provide gender-specific information and emotional support for breast cancer patients.
1. Background
Male breast cancer (MBC)is a rare disease that accounts for less than 1% of all cancers in men and all diagnosed breast cancers [1]. Its incidence rate has risen in the last 2 decades [2], and findings show that men are still diagnosed at later stages and have worse prognoses than women [3,4]. With the incidence of MBC increasing each year, there has been an increased effort to invest in a better understanding of the biological and epidemiological characteristics of MBC, gender differences in clinical presentation, treatment modalities, diagnostic factors, prognosis, and outcomes Breast cancer in men [5,6]. MBC and female breast cancer (FBC) have many commonalities in symptoms (most commonly a lump)and risk factors (family history of breast and/or ovarian carcinoma, obesity, genetic and hormonal aspects) [[7], [8], [9]], but there are also many differences between them [[10], [11], [12], [13]]. Men are diagnosed later, as most chest symptoms are misdiagnosed as gynecological infections, and men often present with more severe symptoms (larger tumors and regional nodal metastases) [5,14].
Despite the differences between MBC and FBC, the vast majority of people think of breast cancer as a typical female disease, most research to date has focused on FBC [2,7]. In nursing the care needs, experiences, quality of life, and psychological health of FBC are well-documented [6,15]. Health professionals, as well as laypeople are often unaware of the risk of MBC [[16], [17], [18]]. This lack of awareness can cause patients' as well as doctors' diagnostic delay, and may result in presentation of breast cancer at a more advanced stage and poorer survival as compared to FBC [7,19]. The overall survival rate for MBC patients was 82.8% compared to 88.5% for female patients [20]. The 5-year survival rate for FBC is 76.8% and the 10-year survival rate is 59.3%. In contrast, a Danish study showed that the 5- and 10-year survival rates for MBC were 55.1% and 31.7%, respectively, a figure much lower than that for FBC [21]. And information, treatment and care for MBC is largely based on FBC [13,[22], [23], [24]]. As with other rare diseases, one may surmise that knowledge about treatment options, side effects, and supportive care for MBC is therefore suboptimal [19].
Men diagnosed with breast cancer are likely to experience a number of significant psychological issues, including concerns about masculinity, feelings of isolation from an uncommon malignancy, or difficulties with physical changes after treatment [25,26]. However, men are still far underrepresented in psychological oncology research. And little is known about the experiences of those healthcare professionals, partners or caregivers who provide support to patients [27,28].
1.1. Aim
To our knowledge, there are no studies that have been conducted that have included all MBC stakeholders (patients, partners, family members, and healthcare workers), although there are several qualitative studies that have singled out patients or partners [25,[28], [29], [30]]. The experiences of stakeholders of MBC are therefore an understudied area. Therefore, in order to understand the experiences of MBC stakeholders in terms of care, information, and emotional support, the literature needs to be consolidated, updated, and evaluated to develop evidence-based intervention programs. This study aimed to clarify, analyze, and consolidate the existing literature on stakeholder experiences in MBC into a structure that facilitates a deeper understanding of the topic.
2. Methods
This study employed a scoping review methodology to examine the range and scope of the available literature on the investigated topic, producing a rigorous synthesis and disseminating the existing evidence to date. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines Extension for Scoping Reviews (PRISMAScR) was conducted following for this review [31].
2.1. Research question formulation
In order to scoping broadly the relevant landscape of literature, the review questions were posed: What are stakeholders' experiences and perceptions of male breast cancer? How can they be categorized?
2.2. Searching for relevant studies
A rigorous systematic search strategy was conducted in PubMed, Embase, Web of Science, Medline, Cochrane and CINAHL from inception to August 2023 (Additional file 1). The search was restricted to human studies and English language papers. A manual search of the Web, Google Scholar and relevant articles’ bibliographies was also implemented.
2.3. Search strategy and selection criteria
Six electronic databases were searched, and components of the search strategy pertinent to this qualitative evidence synthesis (QES) are outlined here.
Included studies had to use qualitative methods for data collection (in-depth/semi-structured interviews; focus group discussions; observation; document analysis; open-ended survey responses) and analysis (thematic analysis; grounded theory; thematic framework analysis). Studies were excluded if they did not meet these criteria or did not report on research methods (Table 1). We used the PerSPectif framework to develop inclusion/exclusion criteria [32].
Table 1.
Inclusion and exclusion criteria relevant to the QES.
| Item | Inclusion criteria | Exclusion criteria |
|---|---|---|
| Perspective | Patients with MBC/partner/caregivers/family members Nurses/doctors/other health professionals or providers of support care in a facility |
People with no contact with MBC patients |
| Setting | Any country | |
| Phenomenon of interest | Experience of illness or perceptions of health care | |
| Environment | All environments, such as hospitals, communities, or families | |
| Timing | The period from diagnosis to survivor-ship | |
| Findings | Perceptions of health care | Unable to isolate and extract content related to MBC |
| Type of document | Research studies reporting qualitative data collection and analysis methods (including mixed methods studies) | Conference abstracts |
| Language | English articles are included only to obtain articles with enough authoritativeness and professionalism, as well as to avoid language barriers and translation bias | |
| Date limits | All studies prior to August 2023 |
QES qualitative evidence synthesis.
Studies conducted in any country and written in English were considered for inclusion. Conference abstracts were not included in this review because they do not provide sufficient information on the methods used and do not usually report the full results of the studies.
Screening and selection decisions are documented in the PRISMAScR flowchart (Fig. 1).
Fig. 1.
PRISMAScR flowchart of the screening and the assessment process.
2.4. Data extraction and synthesis
An Excel spreadsheet was used to extract basic information about the study such as first author, date of publication, country of publication, background of the study, study design, purpose of the study, participants, method of analysis, number of participants, and conclusions on stakeholder perspectives (Table 2).
Table 2.
Characteristics of included studies.
| Authors&Year | Country | Aim | Design | Participants | Stakeholder's perspective(s) |
|---|---|---|---|---|---|
| France et al. [33]（2000） | UK | To gain insight into the experience of MBC. | Qualitative; Phenomenology; Interviews | MBCPs of a regional oncology unit who had completed a course of radiotherapy and/or chemotherapy（n = 7） | Patients |
| Naymark et al. [34]（2006） | Canada | To explore the gendered distinction of breast cancer information, support services, treatment options and research efforts. | Qualitative; In-depth interviews | MBCPs (n = 6)and health professionals (n = 5) | Patients, Health workers |
| Pituskin et al. [25]（2007） | Canada | To explore the experiences of a sample of Canadian men diagnosed with and treated for breast cancer. | Narrative qualitative; Face-to-face unstructured audio-taped interviews | Men≥18 years of age with a diagnosis of in situ, invasive or metastatic breast cancer（n = 20） | Patients |
| Bohn [35]（2008） | USA | To explore the lived experience of males who have been diagnosed with breast cancer. | Qualitative; Phenomenology; Interviews | MBCPs（n = 6） | Patients |
| Duarte do Amaral et al. [36]（2017） | Brazil | To know the context of the man when getting sick and surviving breast cancer. | Qualitative; Semi-structured interviews | Men who survived breast cancer（n = 2） | Patients |
| Midding et al. [30]（2019） | Germany | To explore and understand the needs of MBCPs. | Qualitative; Semi-structured face-to-face interviews | MBCPs（n = 27） | Patients |
| Egestad et al. [29]（2020） | Denmark | 1)To shed light on the experiences of the partners of MBCPs in relation to care, information, and emotional support. 2)To explore how MBCPs impact the partners' everyday life. |
Qualitative; A Phenomenological-hermeneutical inductive approach; In-depth, semi-structured individual interviews | The female partners of MBCPs (n = 12) | Family members and other caregivers |
| Halbach et al. [37]（2020） | Germany | To determine how do MBCPs experience the health care situation with respect to every step in the cancer care process from diagnosis to treatment (surgery, chemotherapy, radiation therapy, [anti-]hormone therapy), rehabilitation, and aftercare? | Qualitative; Semi-structured interviews | MBCPs（n = 27） | Patients |
| Nguyen et al. [27]（2020） | Germany | To investigate how men experience breast cancer, their supportive care needs, and their experiences of attending MBC support groups | Qualitative; Semi-structured interviews by telephone | MBCPs（n = 18） | Patients |
| Pembroke et al. [38]（2020） | USA | To understand the unmet needs of patients treated with radiation therapy for breast cancer. | Qualitative; Individual face-to-face audio-recorded interviews | Male and female patients with breast cancer previously treated with radiation therapy（n = 17, female = 16, male = 1） | Patients |
| Hiltrop et al. [39]（2021） | Germany | To addressed: 1) What kind of RTW patterns exist among MBCPs? 2)What motivates MBCPs to return to work? 3)How do MBCPs experience their RTW? 4)How does the disease influence their work after RTW? | Qualitative; Semi-structured interviews | MBCPs（n = 14） | Patients |
| Levin-Dagan et al. [40]（2021） | Israel | To explore how men experience and respond to the diagnosis of an illness typically associated with women. | Qualitative; Phenomenology; Face-to-face, in-depth, semi-structured interviews | Men over 18 who had been diagnosed with breast cancer within the past 10 years（n = 16） | Patients |
| Trusson et al. [41]（2021） | UK | To explore experiences of treatment-induced alopecia in both sexes and highlight ways in which they might be supported when undergoing breast cancer treatment. | Qualitative; Semi-structured interviews | MBCPs（n = 31） | Patients |
| Herring et al. [28]（2022） | UK | To explore the care-giving experiences of ICs of men with breast cancer in the UK and identify psycho-social support needs and preferences. | Qualitative; Semi-structured interviews | ICs (n = 12, female = 11, male = 1） | Family members and other caregivers |
| Potter et al. [42]（2023） | USA | To understand the lived experiences of men with breast cancer and their changes in occupation. | Qualitative; Semi-structured phone interviews | MBCPs（n = 24） | Patients |
MBCPs male breast cancer patients; RTW return to work; MBC male breast cancer; ICs informal carers.
Findings were extracted from each included study by one reviewer (YMD) and cross-checked by other reviewers (QL, JYM and HYY). Findings were extracted verbatim into a pre-prepared spreadsheet that categorized the findings according to the type of stakeholder expressing an opinion (patients, family members, and other caregivers/health workers). The framework was iteratively adapted as all the findings included in the paper were coded and mapped to the framework in the spreadsheet. Extracted findings were also categorized by the stakeholder who expressed them. Once coding was complete, one author (YMD) re-categorized the coded extracts into initial themes, which were discussed by all authors to ensure relevance and clarify meaning; any disagreements were agreed upon and resolved through discussion. Throughout the analysis, we looked for evidence to confirm or disprove emerging themes. Following an assessment of the credibility of the results of the review (see below), descriptive themes were further categorized into higher-level analytical themes that captured the main narratives that emerged from the study.
2.5. Quality assessment of the primary studies
The quality of included studies was appraised using the Critical Appraisal Skills Programme (CASP) tool for qualitative studies [43]. All three authors independently assessed the methodological quality of the 15 final articles using CASP (Table 3), with moderate and high methodological quality defined as meeting CASP checklist criteria 6–8 and 9–10, respectively. We discussed the different opinions until a consensus was reached.
Table 3.
Quality assessment based on the CASP Qualitative Research Checklist.
| Number | Authors | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | Assessment |
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| 1 | France et al. [33]（2000） | Y | Y | Y | U | Y | N | N | U | Y | Y | Moderate |
| 2 | Naymark et al. [34]（2006） | Y | Y | Y | Y | Y | U | Y | U | Y | Y | Moderate |
| 3 | Pituskin et al. [25]（2007） | Y | Y | Y | U | U | N | Y | Y | Y | Y | Moderate |
| 4 | Bohn [35]（2008） | Y | Y | Y | Y | Y | U | Y | Y | Y | Y | High |
| 5 | Duarte do Amaral et al. [36]（2017） | Y | Y | Y | U | Y | N | Y | U | Y | U | Moderate |
| 6 | Midding et al. [30]（2019） | Y | Y | Y | Y | Y | U | Y | Y | Y | Y | High |
| 7 | Egestad et al. [29]（2020） | Y | Y | Y | Y | U | U | Y | Y | Y | Y | Moderate |
| 8 | Halbach et al. [37]（2020） | Y | Y | Y | Y | Y | U | Y | Y | Y | Y | High |
| 9 | Nguyen et al. [27]（2020） | Y | Y | Y | U | Y | N | N | Y | Y | Y | Moderate |
| 10 | Pembroke et al. [38]（2020） | Y | Y | Y | Y | Y | U | N | U | Y | Y | Moderate |
| 11 | Hiltrop et al. [39]（2021） | Y | Y | Y | Y | U | U | Y | Y | Y | Y | Moderate |
| 12 | Levin-Dagan et al. [40]（2021） | Y | Y | Y | Y | Y | U | Y | Y | Y | Y | High |
| 13 | Trusson et al. [41]（2021） | Y | Y | Y | Y | Y | U | Y | U | Y | Y | Moderate |
| 14 | Herring et al. [28]（2022） | Y | Y | Y | Y | Y | U | U | Y | Y | Y | Moderate |
| 15 | Potter et al. [42]（2023） | Y | Y | Y | Y | Y | U | Y | Y | Y | Y | High |
CASP criteria for qualitative studies: 1. Was there a clear statement of the aims of the research? 2. Was a qualitative methodology appropriate? 3. Was the research design appropriate to address the aims of the research? 4. Was the recruitment strategy appropriate to the aims of the research? 5. Was the data collected in a way that addressed the research issue? 6. Has the relationship between researcher and participants been adequately considered? 7. Have ethical issues been considered? 8. Was the data analysis sufficiently rigorous? 9. Is there a clear statement of the findings? 10. How valuable is the research? (Y Yes, N No, U Unclear).
2.6. Assessing confidence in the QES findings
The credibility of the review conclusions (descriptive themes) was evaluated using GRADE-CERQual, which consists of four components: methodological limitations, consistency, data adequacy, and relevance [44]. Based on the evidence provided, each synthesis conclusion was assessed as having ‘no or very minor concern’, ‘minor concern’, ‘moderate concern’, or ‘serious concern’ with respect to these components. An overall rating was then assigned to each review outcome based on the assessment of the four components. The final confidence levels were categorized as ‘high’, ‘moderate’, ‘low’, or ‘very low’. These represent the extent to which the review findings are reasonable representations of the phenomenon of interest [45]. The GRADE-CERQual assessment [46] was initially conducted by YMD and then further discussed by the author team, and all judgments and decisions were documented (Table 4). The performance of each study outcome across the four GRADE-CERQual components is shown in Additional file 2.
Table 4.
Framework of descriptive and analytical themes with explanation of confidence in the evidence assessment.
| Analytical theme | Descriptive theme (stakeholder's perspective represented) | Studies contributing to the descriptive theme | GRADE-CERQual assessment of confidence | Explanation of confidence in the evidence assessment |
|---|---|---|---|---|
|
|
France [32]; Bohn [34]; Duarte do Amaral [35]; Halbach [36]; Nguyen [37] | Moderate | This finding was graded as moderate confidence because of moderate concerns regarding limitations, minor concerns regarding coherence and adequacy and relevance. |
|
France [32]; Naymark [33]; Pituskin [25]; Bohn [34]; Nguyen [37]; Trusson [41]; Potter [42] | Moderate | This finding was graded as moderate confidence because of moderate concerns regarding limitations and coherence. | |
|
Bohn [34]; Duarte do Amaral [35]; Egestad [27]; Halbach [36]; Hiltrop [39]; Levin-Dagan [40]; Herring [29]; Potter [42] | Moderate | This finding was graded as moderate confidence because of moderate concerns regarding relevance, minor concerns regarding coherence. | |
|
Bohn [34]; Pembroke [38]; Hiltrop [39] | Moderate | This finding was graded as moderate confidence because of moderate concerns regarding limitations. | |
|
|
France [32]; Naymark [33]; Levin-Dagan [40] | Moderate | This finding was graded as moderate confidence because of serious concerns regarding adequacy, minor concerns regarding limitations. |
|
France [32]; Pituskin [25]; Nguyen [37]; Levin-Dagan [40]; Potte [42] | Moderate | This finding was graded as moderate confidence because of minor concerns regarding limitations and adequacy. | |
|
Halbach [36]; Pembroke [38]; Levin-Dagan [40]; Herring [29] | Moderate | This finding was graded as moderate confidence because of minor concerns regarding limitations and adequacy. | |
|
|
France [32]; Naymark [33]; Pituskin [25]; Bohn [34]; Duarte do Amaral [35]; Midding [28]; Egestad [27]; Halbach [36]; Nguyen [37]; Pembroke [38]; Hiltrop [39]; Levin-Dagan [40]; Herring [29]; Potter [42] | High | This finding was graded as high confidence because of no or very minor concerns regarding limitations and coherence and adequacy and relevance. |
|
France [32]; Naymark [33]; Pituskin [25]; Bohn [34]; Duarte do Amaral [35]; Midding [28]; Egestad [27]; Halbach [36]; Nguyen [37]; Pembroke [38]; Hiltrop [39]; Levin-Dagan [40]; Herring [29]; Potter [42] | High | This finding was graded as high confidence because of no or very minor concerns regarding limitations and coherence and adequacy and relevance. | |
|
Midding [28] | Low | This finding was graded as low confidence because of serious concerns regarding adequacy, moderate concerns regarding limitations and coherence, and minor concerns regarding relevance. | |
|
|
Pituskin [25]; Levin-Dagan [40] | Moderate | This finding was graded as moderate confidence because of serious concerns regarding adequacy, moderate concerns regarding limitations, minor concerns regarding coherence. |
|
Pituskin [25]; Levin-Dagan [40]; Trusson [41] | Moderate | This finding was graded as moderate confidence because of moderate concerns regarding limitations and adequacy. | |
|
Levin-Dagan [40] | Moderate | This finding was graded as moderate confidence because of serious concerns regarding adequacy, moderate concerns regarding limitations, minor concerns regarding coherence and relevance. | |
|
Nguyen [37]; Levin-Dagan [40]; Trusson [41] | Moderate | This finding was graded as moderate confidence because of moderate concerns regarding limitations and adequacy. | |
|
Pituskin [25]; Bohn [34]; Duarte do Amaral [35]; Trusson [41]; Potter [42] | Moderate | This finding was graded as moderate confidence because of minor concerns regarding limitations and coherence and adequacy. | |
|
Pituskin [25]; Bohn [34]; Hiltrop [39]; Herring [29]; Potter [42] | Moderate | This finding was graded as moderate confidence because of minor concerns regarding limitations and coherence and adequacy. | |
|
Herring [29]; Potter [42] | Moderate | This finding was graded as moderate confidence because of serious concerns regarding adequacy, moderate concerns regarding limitations. |
3. Results
A total of 310 research literatures were identified for full-text screening in the literature search for large-scale scoping reviews. Of these original 310 research papers, only 15 were qualitative research papers that also met our inclusion criteria (Fig. 1). Table 2 summarizes the characteristics and quality assessment of the included papers. The studies were conducted in Germany (n = 4), USA (n = 3), UK (n = 3), Canada (n = 2), Brazil (n = 1), Denmark (n = 1), and Israel (n = 1). All 15 studies used qualitative data collection methods such as interviews and focus group discussions, with 2 studies using a mixed-method approach combining written questionnaires with personal interviews [30,37]. One paper reported on the experiences of female partners of MBCPs [29], one study reported on the experiences and needs of ICs of MBCPs [28], and one collected data on the perspectives of healthcare professionals in addition to the perspectives of MBCPs [34]. The number of participants in the included studies ranged from 2 to 31 (Table 2).
We generated nine descriptive themes (review findings), and from these, we generated three higher level analytical themes (Table 4): (1) Predicament; (2) Emotion; (3) Support; (4) Coping.
3.1. Analytical theme 1: predicament
Almost all MBCPs have experienced or are experiencing varying degrees of existential difficulties, including delayed access to health care due to lack of information; mastectomy; hair loss and side effects of adjuvant therapy; and financial burden. In addition, the social context of the traditional belief that ‘breast cancer is a woman's disease’ stigmatizes the male population with the disease, which puts pressure on their caregivers at different levels. Four descriptive findings contributed to this theme; the CERQual rating indicates moderate confidence in these.
3.1.1. Finding 1: delayed diagnosis (perspectives of MBCPs and health workers) (moderate confidence)
Delayed diagnosis is multifactorial. In addition to cases of delay in seeking medical attention due to the onset of asymptomatic disease itself, most of the patients did so because of their own lack of attention or delay [35]. Some participants explicitly stated that they had never heard of breast cancer in men before their diagnosis, and even if their breasts were already showing symptoms, they simply did not think about it that way, as a result, the time for diagnosis and treatment is also missed [25,33].
I was getting out of the shower and there is a mirror opposite, and there was a brown mark there, it wasn't very big, no pain, no discomfort, so I ignored it (France 2000; UK).
There wasn’t any reason I delayed going in to have it checked other than thinking it was just something that wasn’t too serious (Bohn 2008; USA).
The lack of relevant knowledge of doctors may also lead to difficulties in diagnosis. Some medical personnel feel uneasy and embarrassed when dealing with MBCPs; they do not know how to treat MBCPs and may even treat male and female patients differently [34]. Some patients report that their doctors do not suspect that the symptoms may indicate breast cancer, and they have to be persistent in order to get their symptoms noticed by their doctors. Doctors either referred these MBCPs to non-breast cancer physicians (e.g., dermatologists) or advised them to take a second look, and it is clear that some of these misjudgments led to delays in diagnosis [37].
Noticed the lump in April, went to the GP in August about something else … Doctor was convinced it was nothing to worry about, but I pushed the point that I did have private medical care. If I hadn't pushed the point, he would have left it at that juncture (France 2000; UK).
Since April 2009, I have been annoying my primary care physician with it and he did not RECOGNIZE it as such (Halbach 2020; Germany).
In addition, supervised prodding by a caregiver or partner accelerates the patient's process of seeking medical care. In some cases, the diagnosis is established months or years after the first symptoms, thanks in part to the personal initiative of the patient and his or her partner [28,37].
3.1.2. Finding 2: body image (perspectives of MBCPs) (moderate confidence)
Disorders of body image mainly include the absence of breasts due to surgical treatment and the problem of hair (hair, body hair, facial hair) loss due to radiotherapy. Society emphasizes that breasts are a reflection of a woman's sexual attractiveness, and some people even believe that men don't look any different after having their breasts removed, and therefore breast cancer means more to women than to men [34]. But this argument is clearly false. Of all the participants, the vast majority of MBCPs reported body image distress as a result of mastectomy. They said that they were almost always afraid to bare their upper body after the surgical treatment, especially when swimming, and they were afraid to let others see the scar on their chest. However, a small number of participants, especially older patients, viewed the loss of their breasts in a positive light, and even saw it as a milestone in the “struggle” they had been involved in Refs. [25,35].
The biggest thing for me was, just being all scarred up and feeling not manly and insecure or whatever. Here’s one example: when I go to the gym, I always try to throw a towel over, I try to hide it. When I’m in the shower, I turn the other way – I try to not let anyone see without being too obvious. At the gym, these guys are all macho, and here I don’t even have a proper chest … (Pituskin 2007; Canada).
For some MBCPs, however, mastectomy scars are not a problem. Instead, it is the hair loss caused by chemotherapy that they find most worrisome [27]. In one study, hair loss was even described as the most stressful part of the treatment process [47]. Some patients believe that hair and thick eyebrows and beards are symbols of masculinity, and that the absence of hair impairs their masculinity [41].
I walked past the mirror (…) that was the weirdest thing … I was totally shocked. It was more shocking than my head (…) to lose your body hair, you know eyebrows and things like that. I’ve got some photos, not many but I don’t look like me; they look like another person (Trusson and Quincey 2021; UK).
3.1.3. Finding 3: survival environment (perspectives of MBCPs and family members and other caregivers) (moderate confidence)
Critical survival circumstances, including social stigmatization; treatment side effects affecting family, work and life; and caregiver stress. The current breast cancer treatment environment is characterized by female-focused medical, informational, and psychosocial services, which directly or indirectly contribute to gender-based stigmatization [40]. Hospitalization in gynecology, where single rooms must be arranged for men, exposes patients to stigmatization during their stay [37].
I received an instruction page written in the female gender with instructions to sleep with a bra and all sorts of things that are connected only with women, not with men. But I don’t know if there are any special instructions for men. They just don’t know, it’s like that (Levin-Dagan and Baum 2021; Israel).
In addition to stigmatization, the side effects of treatment also make it difficult for MBCPs. The first is the weakening of physical functions brought about by the side effects themselves, such as fatigue, debility, lymphedema, and upper limb dysfunction, which interfere with patients' daily activities and make them take time off from work [37]. Second, the vast majority of patients reported sexual dysfunction caused by taking endocrine therapy medications that severely affected partner relationships. The combination of physical and psychological stress made patients feel that their existence was grim [[27], [28], [29]].
First of all, he’s 100% impotent … Well, I haven’t had sex for 3 years, not once … I’ve lost the desire to have sex, entirely; it’s true. And that means we quarrel sometimes, snarl more at each other than we did before. That’s obvious. He also feels inadequate as a man (Egestad 2020; Denmark).
(…) no one could tell me what the side effects were, of tamoxifen (Halbach 2020; Germany).
Two other studies also looked at the brutal circumstances faced by partners and informal caregivers of men with breast cancer. Female partners reported facing the same stigmatization and undervaluing as family members of patients with this ‘feminized disease’ [29]. ICs indicated that they played a large role in caregiving, similar to that of a ‘gatekeeper’. As caregivers, they deserve recognition for their efforts, but little attention is paid to the experiences and needs of this population. In an environment where the needs of men with breast cancer are not being met, it is more difficult for society and the healthcare system to focus on caregivers as a group, and they are often overlooked [28].
When I have been with him (at the hospital), no one ever asked me—about how I am feeling (Egestad 2020; Denmark).
It really impacted me, and I went through, like self-harm, and just feeling really low (Herring 2022; UK).
3.1.4. Finding 4: financial concerns (perspectives of MBCPs) (moderate confidence)
On the one hand, there is the financial burden caused by the treatment of the disease itself; on the other hand, most families have men as the main labor force, and after the disease, men are unable to continue to participate in the society or return to work within a short period of time due to fatigue, side-effects of the treatment, and decline in their physical functioning, thus adding to the financial burden [35,39,40]. In addition, receiving treatment for breast cancer in a female-oriented healthcare system faces difficulties in declaring health insurance services. One MBCP stated that they fought with the health insurance for almost a year before it finally authorized and paid for radiation therapy just because he was male [38].
But, Medicare, the biggest thing with Medicare was this was a male, not a female. They didn’t want to hear it. He’s a male and this doesn’t apply to males. It only applies to females (Pembroke 2020; USA).
3.2. Analytical theme 2: emotion
Although the incidence of MBC is increasing year by year, the overall number of patients is still relatively small compared to the number of female patients. While current research on MBC focuses on the clinical diagnosis and treatment of the disease, it is well known that MBCPs do not only face physical challenges, but also many emotional problems [27]. Research from a medical perspective alone is not enough, and more attention needs to be paid to the experiences, psychosocial impacts, and supportive care needs of stakeholders such as patients and their caregivers [33,48]. Three descriptive findings contributed to this theme; the CERQual rating indicates moderate confidence in these.
3.2.1. Finding 5: shock and confusion (perspectives of MBCPs) (moderate confidence)
Almost all participants' first reaction to the diagnosis was shock and confusion, including their family, friends, and medical professionals [34,40]. Some patients even said they felt a little ‘stupid’ upon hearing the news of the diagnosis, as they had previously thought it was a completely female condition [34].
I had no previous knowledge of male breast cancer and, in spite of my treatment for breast cancer, denies having gained any understanding of it (Naymark 2006; Canada).
3.2.2. Finding 6: stigma (perspectives of MBCPs) (moderate confidence)
The issue of stigmatization was mentioned earlier, as society and the medical establishment know very little about MBC, which is a female-oriented treatment environment, leading to a sense of stigmatization of the patient during follow-up [33]. As the ‘only’ male in a women's clinic, they receive too much attention, and this “undue attention” makes them feel uncomfortable and embarrassed [40]. Although these reactions are silent and/or unspoken, they are major manifestations of stigmatization.
I could have talked to other people but they actually feel embarrassed because it is seen as a woman's complaint, it's daft for a bloke to have breast cancer (France 2000; UK).
3.2.3. Finding 7: isolated and alone (perspectives of MBCPs and family members and other caregivers) (moderate confidence)
The ‘uniqueness’ mentioned above also led to feelings of isolation for patients and their families. One participant commented that she had been “excluded” from the support group. As the discussion was almost exclusively with women, who traditionally view breasts as a sign of femininity and sexual attractiveness, some of the female patients did not want men to be present as they felt that discussing their illnesses would be a matter of female privacy [38]. A male patient also said that he was reluctant to participate in support group discussions for the benefit of other discussants, fearing that his presence would limit the feelings and discussions of the female patients [34].
No male information. Even though… ductal carcinoma is the same for male and female, yet, you know, when I would call up to ask, “Can I come down [to support group meetings]?”… they didn’t want a male there. I even called up a breast cancer foundation and everything that they advertised that you see, everything female, they might have put something for male in there, but no (Pembroke 2020; USA).
3.3. Analytical theme 3: support
In all of the literature reviewed, with the exception of one study discussing the issue of alopecia [41], all of the papers referred to the supportive needs of MBC stakeholders. It can be seen that their needs are hardly ever fully met, whether by the patients themselves, their caregivers/partners, or healthcare professionals [[28], [29], [30],35]. Stakeholder needs need to be met through a wide range of support, both informational and emotional. Three descriptive findings contributed to this theme; the CERQual rating indicates high confidence in two of these, and low confidence in the third.
3.3.1. Finding 8: emotional support (perspectives of MBCPs, health workers and family members and other caregivers) (high confidence)
Emotional support was the support that participants received the most [30]. Providers of this support were widely distributed across all types of intimate relationships, including partners, family and friends, coworkers, and other MBCPs. Married individuals mentioned the support of their spouse as the most important resource in their support system. MBCPs with partners indicated that their wives were their most important and ‘first choice’ source of emotional support [35]. Psychosocial support from healthcare professionals could also help MBCPs feel cared for and valued. In addition, patients' partners and caregivers, their emotional needs need to be seen. An article investigating the experiences and needs of informal caregivers of men with breast cancer showed that almost all participants reported a significant lack of formal practical or emotional support [28].
My wife was my biggest source of support. She saw me through a lot and I had friends who were good about coming to the hospital … (Bohn 2008; USA).
Throughout all of this I have never received any support at all, no support has ever been offered (Herring 2022; UK).
3.3.2. Finding 9: informational support (perspectives of MBCPs, health workers and family members and other caregivers) (high confidence)
The results of this study found that the plight of the patients and stakeholders mentioned above is attributed to the lack of knowledge about MBC. Relevant information support is insufficient: 1)healthcare professionals lack knowledge about MBC and have not been provided with information or literature specific to MBC, and are therefore unable to take the right action [33,34]; 2)patients themselves lack medical information about treatment recommendations for MBC due to insufficient knowledge about the disease, and find it difficult to know what they are facing, leading to delays in seeking medical attention, experiencing stigmatization, and psychological trauma [25,35,36]; 3)partners or caregivers lacked the appropriate information support and did not know how to provide the right support and help to the patient, with one patient's female partner stating that they needed information more than the patient did, but that this need was not met by the lack of information provided by healthcare professionals, resulting in a sense of frustration [28,29].
I found that not a lot was known about male breast cancer. They’d say, ‘‘we’re going to try this, but we have no information on it’‘. I checked the Internet, and everything was about women. Everything about breast cancer is about women (Pituskin 2007; Canada).
There simply hasn’t been anyone who’s been able to answer my questions. Of course, if there isn’t any material available or any empirical data, something scientific or research on it, well, then … sometimes I doubt whether Lars is getting the right treatment (Egestad 2020; Denmark).
Society and the healthcare system need to provide correct and timely information to support the relevant interest groups through the dissemination of knowledge about MBC, to increase the public's awareness of MBC and to reduce stigmatization.
3.3.3. Finding 10: media support (perspectives of MBCPs and family members and other caregivers) (low confidence)
We found that, in addition to the most frequently mentioned emotional and informational support, one paper also mentioned ‘instrumental’ support [30]. This is a “medium” that accelerates the access of MBCPs to both types of support. It includes visible physical aspects, such as transportation and physical care provided by family members (help with bathing), accompaniment to medical appointments, etc., as well as invisible aspects, such as facilitation services provided by co-workers (providing a flexible work environment) or healthcare professionals (connecting patients to rehabilitation and cosmetic centers) [30].
As the diagnosis was breast cancer he said [father]: “I drive you, I support you, I’m with you.” And so he got involved very, very much and later on to chemotherapy. He always picked me up here, drove me there, then at noon, when I was through, then I could call him and he picked me up (Midding 2019; Germany).
3.4. Analytical theme 4: coping
Patients and their caregivers experience varying degrees of information stress and depression and anxiety throughout the stages of the illness [49]. Although MBCPs experience overwhelming emotional stress during both the diagnostic and management phases, they cope by thinking positively [25,36], denial, acceptance [36], or distraction [49,50]. MBCPs analyze environmental factors and adopt coping strategies appropriate to the specific situation. For example, in healthcare settings, men often downplay the effects of cancer by comparing themselves to female patients. And in response to changes in body image, they either choose to ignore the ogling eyes of others [25] or give up swimming and hide their bodies [33]. Seven descriptive findings contributed to this theme; the CERQual rating indicates moderate confidence in these.
3.4.1. Finding 11: selective disclosure (perspectives of MBCPs) (moderate confidence)
The stigmatization experienced by MBCPs contributes to their reluctance to fully disclose their condition to anyone outside their immediate family [25,27,36]. Most patients only share their condition with those closest to them and strategically choose who and what to say, with very few men disclosing their diagnosis to everyone [36]. The shame of being diagnosed with a "woman's disease” and the regret of not wanting to see others show their condition are contributing factors to this outcome.
That’s something that I kept hiding from people. When I said I had cancer and they wanted to know where in the body, I said, “It’s somewhere in the body.” I didn’t get into it … I didn’t tell people, I didn’t want to say, I was ashamed, I am ashamed of breast cancer (Levin-Dagan 2021; Israel).
3.4.2. Finding 12: cover up (perspectives of MBCPs) (moderate confidence)
In the face of physical changes (surgical scars, hair loss), most men choose to hide their surgical scars from others in order to avoid the discomfort caused by the mastectomy [40]. In addition to places such as beaches and swimming pools, MBCPs are mindful of their daily attire, selectively wearing tops that conceal breast asymmetry and avoiding tight-fitting tops or sleeveless shirts [35]. There are even men who are considering breast reconstruction surgery, but the fact that the relevant brochures contain little information about MBC is also a major problem. With regard to treatment-induced hair loss, some patients choose to shave their heads to disguise the fact that they have the disease, while others choose to wear a wig or hat because it preserves their masculinity [41].
Look, if it’s at the Dead Sea, who else is going there? Only those who have all kinds of things. Even there I didn’t take it off, I went in the water with my shirt on because I felt ashamed. It’s not really shame. I don’t know … (Levin-Dagan 2021; Israel).
3.4.3. Finding 13: rationalization (perspectives of MBCPs) (moderate confidence)
Some MBCPs have tried to popularize MBC by explaining that men, like women, have genes associated with breast cancer from a biological and genetic point of view, showing that breast cancer can happen to anyone, and responding to a sense of ‘otherness’ with ‘normalization and rationalization’ by citing the relevant morbidity rates, emphasizing that it is not an uncommon disease [40].
They can. What is the difference between us? Men also have mammary glands, except that ours don’t grow. That’s it (Levin-Dagan 2021; Israel).
3.4.4. Finding 14: making comparisons (perspectives of MBCPs) (moderate confidence)
The review showed that MBCPs convince themselves that their illness is “not so bad” by comparing themselves to female patients [40,41] and comparing MBC to other types of cancer and disease [40]. And in most cases, these comparisons were made in a downward direction, i.e., MBCPs reduced stigma by positioning themselves in a better position than the dimension being assessed.
It’s made me realise y’know what a difficult journey it is for a woman, more so than a bloke as a say y’know I lost my hair but I didn’t have a lot of ‘air t’ start with (Trusson 2021; UK).
3.4.5. Finding 15: keep humor and face calmly (perspectives of MBCPs) (moderate confidence)
In contrast to the four negative-types (avoidance, downplaying) coping strategies described above, some of the MBCPs chose to cope with the experience of the disease in a positive manner. These participants, especially the older men, were unafraid to discuss their condition with others and described their experience of breast cancer without mentioning personal sadness associated with the disease, interspersing each interview with laughter [35]. They felt that breast cancer was just something they had to deal with in their lives and that there was no escaping it, so they chose to keep a sense of humor and be open about it. They do not care about the change in their body image and consider it a “badge of honor” for their fight against the disease.
It’s kind of funny, but! don’t consider that breast cancer significant. Of course, you go through denial, anger, acceptance, I guess there wasn’t much anger. It was just - okay, you got it, now what are we gonna do about it? It was just kind of something else to take in stride. It really hasn’t affected my life since it turned out so well. I don’t really think it’s affected my life at all. I do everything that I’ve always done (Bohn 2008; USA).
3.4.6. Finding 16: starting a new life and career (perspectives of MBCPs) (moderate confidence)
In contrast to the humor in the face of adversity mentioned above, there are some men who cope in a more resilient way-through adversity. Those who have faced and overcome cancer can be defined as resilient, i.e., having the ability to overcome adversity and reconceptualize it in a positive way [36]. Instead of having their lives devastated by breast cancer, they learn from the experience that life is precious and beautiful [35,42], and return to work with a vision for the future [39]. When diagnosed with a potentially life-threatening illness, many people began to re-examine the topic of “death”, which prompted them to develop a sense of proactivity and to work harder to realize their dreams. In addition, some men felt that the diagnosis of breast cancer raised their awareness of their own health, which led them to change their daily routines and habits [42], and even to overcome their fears and start trying new ways of living [34].
It made me realize that my health is something more to be prized and guarded than I’ve really done. I just haven’t really thought about health a whole lot until this. It also makes me realize that life is short. Live it to enjoy it. I’ve always kind of believed in that, but it kind of brings it home to you … It made me kind of think about what’s important, what’s valuable, and kind of reevaluate my priorities a little bit (Bohn 2008; USA).
3.4.7. Finding 17: taking action to help others (perspectives of MBCPs and family members and other caregivers) (moderate confidence)
Given the stigma they have experienced, some MBCPs and their partners/carers choose to become advocates. They launched campaigns to raise awareness of MBC; conducted negotiation sessions with healthcare providers; and participated in various MBC awareness and public service events. One caregiver claimed that participating in these pro bono events provides emotional support for MBCPs and caregivers, sharing of medical experiences and practical information, as well as advice on treatment and management of side effects. Organizing support groups can also help patients and their families to improve their self-confidence, coping skills and provide the best possible care for the patient [28].
And some MBCPs have achieved self-worth through public speaking, joining MBC organizations, participating in research, volunteering and educating others in a range of new careers and roles [39]. Several MBCPs have also established non-profit foundations focused on meeting the personal and social needs associated with MBC, raising awareness of past, present and future MBCPs, and ensuring that men in similar situations have access to the necessary information and support [42].
The goal was if I can help one male through that, it was done. I achieved my goal. But one person, you know, I mean once you get that satisfaction from that, you just have to keep going (Potter 2023; USA).
4. Discussion
This review reveals information about the experiences and perceptions of MBC stakeholders. The majority of studies have focused on Germany, UK and USA, indicating a paucity of research in regions such as Asia and Africa. The global incidence of MBC is increasing year on year [51] and further research is needed in these countries. The themes that emerged from the review revealed current unmet needs regarding the populations of interest, as well as current existential challenges and negative impacts on the populations of interest. The stigmatization and exclusion of these men from the treatment process, even on the basis of the diagnosis of ‘breast cancer’, is alarming. Due to a lack of knowledge about MBC among the public and healthcare providers, men with the disease are often delayed in diagnosis, leading to more severe physical and emotional effects. The results of the study found that men and their caregivers were stigmatized to varying degrees, and despite some positive experiences, generally experienced a range of negative experiences, which can also be taken as a direct result of social, medical institutional, and self-stigmatization. Although research has been done to account for the stigmatization of MBCPs [30,48], further research is needed to explore both the healthcare system and self-perceived stigma, as well as to conduct further studies in other Western and Eastern countries. The issues revealed by the findings-male patients experiencing more discrimination during consultations; lack of gender-specific information on breast cancer in healthcare settings; unmet needs of MBCPs; and significant emotional stress for partners or caregivers-are worrisome. MBCPs are reported to be marginalized in clinical settings, excluded in clinics, neglected in wards, and living in dire circumstances [52]. Healthcare providers should therefore be more aware of and responsive to the needs of MBCPs.
It should also be noted that despite the lower incidence of breast cancer in men compared to women, it is still important for healthcare professionals to be made aware of MBC and to take the right actions to ensure that men receive complete care [6]. And it is up to the medical staff at the clinic to ensure that men are not marginalized, that their concerns are fully listened to and addressed, and that they show compassion and kindness in their interactions. During hospitalization, medical staff on the wards need to value MBCPs and make them feel valued. Healthcare facility administrators can create brochures to educate the general public about MBC and briefly describe the current challenges faced by MBCPs as a way of reaching out to relevant stakeholder groups.
Stigmatization at the family-social level is also a deterrent for MBCPs to fully disclose their condition to people outside their immediate family, with most patients adopting selective disclosure. This leads to more negative coping strategies rather than positive coping among MBCPs. There is a need for future action to raise awareness socially and culturally to promote the well-being of MBCPs. There is no doubt that gender-related stigmatization severely affects the experience of the population of interest, and MBCPs are compelled to demonstrate their masculinity in every way by crying out and constantly challenging social stereotypes against gender-specificity. Traditionally, the pink ribbon has been used to symbolize breast cancer as a way to raise awareness among the masses. But is this suggestively feminine color-pink-another form of stigmatization? In the future, blue ribbons could be used to raise social awareness of MBC [6]; studies could also be conducted to compare the different experiences of male and female.
In addition to the consultation period, the out-of-hospital rehabilitation phase, MBCPs also reported varying degrees of distress, including changes in body image (missing breasts, hair loss), limitations in daily activities, and chemotherapy side effects (sexual dysfunction). Among these, sexual problems were also reported by partners as distress, particularly in younger patients. However, in contrast to changes in body image, most MBCPs reported that sexual limitations were not their primary concern. Changes in body image may lead to additional emotional and social stress and therefore need to be explored further. Only 2 of the 15 studies explored the experiences and needs of partners and informal caregivers [28,29], suggesting a paucity of relevant research. The mental health of partners or caregivers, as an important source of emotional support for MBCPs, requires equal attention. Further research could therefore explore this area.
5. Methodological limitations
There are some limitations to this review. We used a relatively small sample of articles and excluded studies in non-English languages, which may have led us to omit some studies of MBC stakeholder experiences. However, we also used multiple databases in order to minimize the possibility of selection bias. The 15 qualitative studies included in this study were homogeneous in terms of qualitative research design and met our inclusion criteria. Qualitative data from mixed-methods studies that addressed our research questions were also included. Factors such as cultural diversity and differences in participant perspectives may also have influenced the analysis of these studies. Despite these limitations, we achieved the goal of studying men's breast cancer illness experiences, perceptions, and unmet needs from a stakeholder perspective.
6. Conclusion
Gender inequalities and stigmatization regarding MBC exist at the level of the individual patient, the healthcare system and the family community. These stigmas negatively affect the experiences of MBCPs and their caregivers to varying degrees, from diagnosis to long-term survival. Patients themselves continue to rebuild their masculinity by utilizing their personal strengths and social support to manage their disease. However, during the diagnosis and treatment phase, men can feel a great deal of stigma and have limited access to care. Therefore, there is a need to confront and address gender inequalities in the management of breast cancer, and healthcare professionals should also treat the needs of male and female patients equally and give them equal attention. In addition, there are a number of unique needs of MBCPs and their caregivers, including reducing stigmatization at the provider and societal levels; providing more gender-specific information about male care and management; and giving access to support groups. Most of the studies reviewed were conducted in Western countries, so it is important to have a comprehensive understanding of the experiences of MBC stakeholder populations in different cultural contexts. There is a paucity of research on the experiences and challenges of MBCPs during palliative care, so further research is needed in this area.
Ethics approval and consent to participate
Not applicable.
Consent for publication
Not applicable.
Availability of data and materials
All data generated or analysed during this study are included in this published article [and its supplementary information files].
Conflict of interest statement
The authors declare that they have no competing interests.
Funding
The present study was partially funded by the Discipline Construction Program of Shanghai Pudong New Area Health Committee (internal funding code: PWZxk2022-06)，Shanghai Hospital Association Hospital Management Research Fund (internal funding code: X2022058) and Youth Science and Technology Program of Shanghai Pudong New Area Health Committee (internal funding code: PW2021B-04). Open access funding provided by the Shanghai University of Traditional Chinese Medicine.
CRediT authorship contribution statement
Maodie Ye: Data curation, Writing – original draft. Lin Qiu: Methodology, Writing – review & editing. Yongmei Jin: Funding acquisition, Supervision. Yingying Huang: Formal analysis, Validation.
Acknowledgements
Many thanks to all those who contributed to the data collection for this study.
Footnotes
Supplementary data to this article can be found online at https://doi.org/10.1016/j.breast.2024.103694.
Appendix A. Supplementary data
The following are the Supplementary data to this article:
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Supplementary Materials
Data Availability Statement
All data generated or analysed during this study are included in this published article [and its supplementary information files].