Examining stigma in experiences of male breast cancer patients and its impact as a barrier to care: a narrative review

Introduction

Background

Male breast cancer (MBC) is an extremely rare disease, whose incidence has increased by 40% from 1975 to 2015 (1). While MBC incidence rates have greatly increased compared to breast cancer (BC) in women, MBC still accounts for nearly one percent of total diagnosed BC (2). In 2019, the United States reported 2,670 MBC cases and 500 fatalities due to this disease (3). Despite the rarity of MBC, it remains a significant health concern for male patients, as recent studies have found MBC to have a 5-year survival rate of 77.6%, compared to 86.4% in female breast cancer (FBC) (4,5). This difference in the survival rate of MBC patients raises questions as to the root of this disparity. A narrative review by Abboah-Offei et al. summarizes that MBC patients often experience stigma within the healthcare system, which worsens their health outcomes (6). Stigma in healthcare is defined as the labelling, stereotyping, and separation of a group of individuals, leading to discrimination and loss of status (7). In the case of MBC, stigma refers to all barriers found in the healthcare system, social groups, and individual beliefs that prevent MBC patients from receiving effective diagnosis and treatment (7). For example, a comparative analysis of the National Cancer Database by Elimimian et al. discovered that nearly 55.3% of MBC patients were diagnosed with stage II or higher BC, compared to only 38% for FBC. MBC patients may face poor health outcomes, such as delayed diagnosis, due to a combination of stigma in the medical community and social groups (8,9).

Rationale and gap in literature

Male patients with BC need comprehensive and accessible care to prevent metastasis and ensure high survival rates (6,10). To provide MBC patients with care that relieves psychological distress and improves quality of life, the patient experience must be effectively optimized during diagnosis and treatment (10). While previous studies have effectively identified the stigma and difficulties MBC patients face, due to lack of awareness, feelings of embarrassment, and poor healthcare guidelines, there has been limited discussion on how these domains of stigma act as barriers to care (6). As such, this narrative review aims to evaluate aspects of stigma experienced by MBC patients and evaluate how this may lead to poor health outcomes. Additionally, by identifying this information, specific methods and interventions that can minimize the stigma experienced by MBC patients can be discussed. We present this article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-24-67/rc).

Methods

Literature relating to MBC was identified through a literature search spanning from February to April 2024. The searched databases included PubMed and Google Scholar to identify relevant articles on MBC, stigma, awareness, and social support. Specifically, the keywords in the search included [Male breast cancer] AND [stigma] OR [stigmatization] OR [awareness] OR [experiences] OR [social support]. Articles published from January 2005 to April 2024 were included in this review. The articles were selected by two independent reviewers (S.R.D. and M.A.K.) and any discrepancies were resolved through consensus with a third reviewer (C.A.C.G.). The selection criteria included retrievable articles, written in English, and pertaining to domains of stigma and barriers to care in MBC (Table 1).

Results

Domains of stigma experienced by MBC patients

MBC patients experience various forms of stigma, and each domain contributes to a unique set of challenges faced by patients (6). This review includes the most impactful aspects of stigma experienced by MBC patients, including lack of awareness among healthcare professionals, as well as feelings of embarrassment in MBC patients (7).

Lack of awareness among healthcare professionals

The level of awareness about MBC among healthcare professionals plays a key role in MBC patients’ quality of care, diagnosis, and treatment (11). Several studies have conducted interviews and collected quantitative data, to identify gaps in the awareness of the medical community towards MBC (11,12). Common themes include lack of specific data about MBC, lack of a screening process, difficulties with insurance companies to cover testing commonly for women, and more (13).

To diagnose BC in women, screening programs are put in place that involve mammograms every two to three years (14). Guidelines for FBC screening have been clearly defined, with patients screened every two years on average, while at-risk patients are recommended to undergo mammograms annually (15). A current meta-analysis by Rahman et al. determined that mammograms have achieved a 20% reduction in BC mortality in women (15). Another study by Tabár et al. reported that the risk of mortality from BC decreased by 31% among FBC patients, over a 29-year period (16). However, Mittmann et al. conducted an investigation that determined mammograms are not cost-effective in women, even in the high-risk population (17). As a result, due to the significantly lower incidence of BC in men and the cost of mammograms, routine screening procedures are not justified (18). Oftentimes, BC in men is diagnosed with patients detecting a palpable lump or mass near the breast, and presenting this to their physician (18,19). The lack of clear guidelines on MBC screening appears to be associated with higher stage BC diagnosis in men (19). This is seen in a retrospective study by Co et al. that surveyed 56 MBC patients and determined that 67.8% (38/56) of patients presented with lymph node metastasis at diagnosis, and 10.7% (6/56) of patients presented with distant metastasis (stage IV) at the time of diagnosis (11). In contrast, Iqbal et al. carried out a cross-sectional study on medical records of 50,924 women with BC and determined that only 5.1% of patients were at stage IV BC, during diagnosis (19). Sahin et al. suggested that the comparatively higher incidence of late-stage BC at the time of diagnosis among men is likely due to the lack of screening and limited awareness about MBC (20).

Numerous studies including Potter et al. and Chichura et al. evaluated physicians’ awareness surrounding invasive surgeries in BC (12,13). Invasive surgeries include, but are not limited to: simple mastectomy, modified radical mastectomy, radical mastectomy, and lumpectomy (21). Based on guidelines from the National Comprehensive Cancer Network (NCCN), if female patients present with the pathogenic BRCA1 or BRCA2 gene mutation, surgeons can discuss the option of a risk-reducing mastectomy with the patient (12,22). This is clearly reflected in a study by Bellavance et al., who surveyed all 2,436 members of the American Society of Breast Surgeons, on their recommendations of a certain type of risk-reducing mastectomy: contralateral prophylactic mastectomy (CPM) (23,24). The authors discovered that 95% of surgeons only felt comfortable performing a CPM, if the patient specifically requested it (23). Similarly, another population-based study by Katz et al. surveyed 366 surgeons and determined that 96% of surgeons were reluctant to perform CPM, unless the patient discussed it with the surgeon to perform the procedure (25,26). These two studies emphasize that while surgeons may not recommend CPM freely, they certainly discuss the option of this procedure with the patient (23,25). In contrast, Chichura et al. conducted a similar study on MBC surgeons, and evaluated whether they would recommend mastectomies to male patients with BRCA1 or BRCA2 gene mutations (12). Their survey discovered that nearly 18% of surgeons had “no recommendations at all” (12,27,28). Another retrospective study by Elmi et al. analyzed the American College of Surgeons National Surgical Quality Improvement Program (NSQIP) database, to determine common surgical procedures in MBC (29). The authors confirmed that risk-reducing mastectomies are rarely conducted in male patients, as surgeons currently have limited guidelines to follow. This is consistent with the included NCCN guidelines for BC in men, as the organization has limited recommendations for risk-reducing mastectomies for men (30). Importantly, a retrospective cohort study by Li et al. sampled 4,405 MBC patients, and determined that CPM is associated with decreased breast-cancer-specific death (31). Given that CPM is beneficial for some patients, the presence of clear guidelines on their application is necessary. This identifies a key gap, as there is less research available to assist surgeons in making informed recommendations regarding MBC, compared to FBC (32). Specifically, these findings demonstrate how stigma and gender biases can lead to inconsistent care among patients of MBC.

A study by Bootsma et al. conducted a survey of medical professionals and MBC patients, to determine their unmet information needs about MBC (10). The authors surveyed 77 MBC patients that had been diagnosed between 2011–2016, and 139 healthcare professionals including oncologists, nurse practitioners, oncology nurses, and psychosocial professionals. The questionnaire included topics focused on the acute and late effects of BC, with separate questions for healthcare professionals (10). The study discovered that 110 out of 139 healthcare professionals searched for information on MBC, relating to genetic testing and anti-hormonal therapy, among others. Additionally, nearly 43 of the 77 MBC patients (56%) felt that there was a lack of information about one or more of the late effects of MBC (10). Specifically, patients expressed concerns about the availability of information on sexual activity, including loss of libido and erectile dysfunction (10). Similarly, a literature review by Donovan et al. referenced qualitative studies on MBC patients’ experiences, and how some patients were not informed about potential sexual dysfunction attributed to their treatment (33). This was also a theme in a qualitative study by Nguyen et al. in which 18 MBC patients were interviewed via telephone and many of the participants mentioned that they had decreased libido and sexual activity, due to their anti-hormonal therapy (34,35). They expressed their wish for more information on the effectiveness and side effects of anti-hormonal therapy, specifically how this treatment impacts patients’ sexual activity (36). Contrarily, a qualitative study by Foà et al. explored unmet information needs in FBC and determined that women were often thoroughly informed of the sexual side-effects of their treatment (37). Evidently, these studies suggest that there is a lack of information about the sexual activity of MBC patients among healthcare professionals, which leads to the patients’ unmet concerns.

Feelings of embarrassment

There is a large body of literature on feelings of embarrassment, alienation, and decreased masculinity among MBC patients (11,38). Throughout the past few decades, the understanding of MBC and feelings of emasculation in male patients has been changing. Previous studies, including a phenomenological study by Donovan et al. [2007], discovered that 43% of MBC patients reported questioning their masculinity, because of their diagnosis (33,39,40). Similarly, Kipling et al. [2014] surveyed 78 MBC patients, to determine the psychological impact of MBC (38). The authors discovered that six of 78 participants (7.7%) experienced feelings of emasculation due to their diagnosis (38). However, a recent study in 2017 by Rayne et al. conducted a retrospective file review of 3,000 individuals, identifying 23 MBC patients to include in the sample (41). The patients then participated in a survey to further understand the impact of MBC on their masculinity. Most patients (72%) selected disagree or neutral, with all relevant questions that indicated MBC reduced their feelings of masculinity (41). While patients may experience limited impact on their feelings of manliness due to their MBC diagnosis, other studies highlight feelings of alienation and embarrassment during treatment (11). Therefore, it is important to effectively evaluate how MBC leads to psychological distress in patients, to better identify its role as a barrier to care (42).

A study by Co et al. treated 56 MBC patients with a median age of 61 years, to identify reasons for patient embarrassment and its effect on their access to care (11). The authors determined that nearly 64.2% of patients felt moderate (or higher) embarrassment during the presentation of symptoms, and 67.8% of patients experienced this at the breast clinic (11). Oftentimes, patients attributed these feelings to being isolated in the clinic and treatment centers, as there were a greater number of FBC patients present (43,44). This is specifically seen in a study by Midding et al. that determined the highest reason of stigma, being 66.7% among MBC patients, is being “the only men among women” or “many women. But me as the only man”. In fact, their study determined that stigmatization of MBC patients occurs in the hospital, during chemotherapy (P=0.049) and radiation (P=0.017) treatments (43). Another qualitative study by Nguyen et al. interviewed MBC patients, with some mentioning “there are only women in the hospital… I really felt like an outsider” (34). Similarly, the qualitative study by Potter et al. references the feelings of exclusion felt by MBC patients, due to the general clinic environment being tailored for women (13). These findings suggest that men feel especially excluded during chemotherapy and radiation therapy while being treated in a clinic filled with female patients, and designed for FBC. The notion of exclusion and embarrassment among the male population plays a key role in their quality of life, as it can lead to psychological distress and delayed access to medical care (45).

Social stigma as a barrier to care

This review has identified the main roots of MBC stigmatization to be the lack of awareness among healthcare professionals and the patients’ own feelings of embarrassment (11,12). As such, this stigmatization leads to the creation of barriers for MBC patients when accessing health care.

A study by Brain et al. explored the presence of psychological distress, specifically anxiety and depression, in a cohort of MBC patients (45). The authors discovered that symptoms of anxiety were reported in 6% of patients, and depression was reported in approximately one percent of patients (45). While these statistics may not reflect that psychological distress is found in a large portion of MBC patients, it does indicate that distress is present to a certain extent. More importantly, the authors conducted statistical analysis to determine the factor(s) associated with increased anxiety or depression among MBC patients (45). Their findings suggested that anxiety was most likely linked to uncertainty about the future (P<0.001), while depression was associated with altered body image (P<0.001) (45). Patient’s uncertainty about the future can largely stem from the lack of MBC-specific information for prognosis and guidelines for care (46). A survey-based study by Ruddy et al. sampled 42 MBC patients, with 8% reporting abnormal symptoms of anxiety, and 3% reporting abnormal symptoms of depression (47). The authors suggest these symptoms are likely due to fear of cancer recurrence and negative changes in body image (47,48). Similarly, MBC patients’ negative perception towards their body image stems from feelings of embarrassment and isolation. The study by Chichura et al. clearly illustrates this, as their survey of MBC patients identified that patients often suffer from altered body image, which leads to the covering of the chest in public spaces (12). Evidently, this suggests that stigma in the form of patient embarrassment and lack of awareness among healthcare workers negatively influences MBC patient health through symptoms of psychological distress (45).

Furthermore, the current literature supports that MBC patients experience delayed diagnosis due to feelings of embarrassment and lack of awareness (49). The study by Co et al. interviewed 56 MBC patients and determined that the time between onset of symptoms to diagnosis ranged from 1 to 10 years among participants. On average, the cohort of participants had a delayed diagnosis by around 14–21 months (11). The authors also suggested that this is mainly due to feelings of embarrassment experienced by patients during hospitalization, as well as lack of awareness amongst the public (11). Similar findings were reported in a study by Altiner et al. conducted a survey of 411 general patients in the hospital, ranging from 18–75 years old, and asked them questions about MBC (50). They discovered that 61.1% of participants did not know it was possible for BC to occur in men (50). Furthermore, in another study, 83.9% of MBC patients did not know it was possible for them to develop BC, before their diagnosis (11). To compare these statistics to FBC, a cross-sectional study by Somanna et al. included 181 women to determine the time between self-detection of symptoms and confirmed diagnosis (51). The authors discovered that the median time until diagnosis was nearly 3 months. Similarly, Petrova et al. conducted a systematic review and meta-analysis on the time from detection of symptoms to diagnosis for FBC patients in different countries of the world and discovered a time range of 1 to 4 months (52). Evidently, MBC patients experience longer periods of time to diagnosis. This identifies the lack of awareness among the general population, as the lack of knowledge regarding MBC can cause one to ignore symptoms. The neglect of symptoms ultimately causes a delay in medical assistance, and thus lengthen the time until diagnosis (51,52).

Addressing unmet needs of MBC patients

There are numerous interventions designed to address the stigma experienced by MBC patients, being the lack of awareness among healthcare workers and patients’ feelings of embarrassment (53). It is important to understand how the current healthcare system has addressed the stigma experienced by MBC patients, to identify strategies that have been effective in raising awareness and information. For example, the lack of a consistent screening program in MBC patients has led to delayed diagnoses (53). A study by Gaddam et al. evaluated 414 asymptomatic men who underwent genetic testing and determined the effectiveness of mammography screening for MBC (54). The authors conducted genetic testing for all patients, to identify potential BRCA1 or BRCA2 gene mutations that could increase the risk of BC (22). Patients with a history of BC or the pathogenic gene mutation were recommended to complete mammograms. Ultimately, 10 patients adhered to the mammogram screening program, which was effective in the early detection of BC in two high-risk patients (54). This rate of diagnosis (two in 10 patients) is very similar for FBC patients undergoing mammography, demonstrating that mammography is beneficial in MBC screening (54). Although the risk of BC in men is low, high-risk patients can benefit from a consistent mammography screening program, to avoid a delayed diagnosis. This is further reflected in the 2020 American Society of Clinical Oncology guidelines, indicating that men with a history of BC or genetic predisposition should undergo annual screening via mammograms (55).

As seen in Table 2, studies including Chichura et al., Midding et al., and Altiner et al., among others, reference the lack of male-specific information to address concerns of MBC patients (12,43,50). A mixed-methods systematic review by Abboah-Offei et al. investigated the experiences of MBC patients after diagnosis (6). They also discovered that there is a general lack of information on the care and treatment of MBC patients. Specifically, Bootsma et al. suggested that the common concern among MBC patients is the impact of treatment on their body’s appearance and sexual activity (10). To minimize patients’ psychological distress caused by this form of stigma, a survey-based study by Kipling et al. sampled 78 patients and determined that the concerns of MBC patients would be addressed by providing possible images of their post-mastectomy wounds (38). Similarly, Bootsma et al. also supported that these images can help ease patients’ concerns about their appearance and body image (10).

Lastly, the concept of empathy in healthcare refers to the ability of healthcare professionals to take into consideration the patient’s circumstance and perspective, and provide an understanding response (57,58). A qualitative study of 20 FBC patients by Liu et al. reported that as patients recognized the caring and empathetic attitude of oncology nurses, they experienced a reduction in stress (59). Yang et al. conducted a study with MBC patients, enrolling 256 male patients, and explored the correlation between doctor’s empathy, patient stigma, and the strength of the immune response (57). Their study discovered that there is a statistically significant negative correlation (Pearson correlation coefficient of −0.799, P<0.01), between patient stigma and doctor’s empathy (57). This indicates that as physicians and healthcare professionals provide a more empathetic care to MBC patients, the feelings of stigmatization experienced by MBC patients decrease. Given that physicians often cannot address all questions of MBC patients, they can further adopt an empathetic attitude by willingly and respectfully listening to patient narration (60).

Limitations and future directions

This narrative review conducted a search of PubMed and Google Scholar as the relevant databases. Restricting the search to these two databases could have limited the access to some literature. Future reviews should strive to include a wider variety of databases, including MEDLINE, Embase, and more. Moreover, the search strategy was also restricted to only studies written in English. This acts as a limitation of this review, as relevant studies could have been excluded. However, this methodology is consistent with the aim of this study, as it provides a comprehensive review of selected literature in the field.

Future research should focus on determining the efficacy of screening programs for men, similar to how women are screened every one to two years. While current research suggests men with pathogenic mutations could potentially benefit from screening, there needs to be more studies on the risks and benefits of providing this service to all men. More importantly, such studies should aim to collect data in quantitative methods, as there is a large body of qualitative evidence focused on MBC. While qualitative studies have been effective in identifying domains of stigma in this article, they often lack the statistical power to establish guidelines and generalizations. By emphasizing interventions that address stigma in MBC, the medical community can develop evidence-based policies and changes that ensure equitable diagnosis and treatment for all MBC patients.

Conclusions

Overall, this narrative review investigated the forms of stigma experienced by MBC patients, including lack of awareness among healthcare professionals and feelings of embarrassment experienced by the patients. Importantly, by comparing these circumstances to those experienced by FBC patients, it becomes clear that MBC patients are disproportionately affected. Moreover, the findings reveal that lack of awareness and knowledge in the medical community, coupled with patients’ feelings of alienation, greatly hinder the quality of care received by MBC patients (10,50). These barriers include delayed diagnosis, and symptoms of psychological distress including anxiety and depression, all of which negatively impact patient outcomes (45). Addressing these inequalities in MBC care includes raising awareness about MBC in the medical community and the general population, developing male-specific guidelines for screening and care of patients, and fostering a more empathetic environment for patients (60).

Acknowledgments

Funding: None.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine for the series “Supportive Care After Breast Cancer: Challenges and Opportunities”. The article has undergone external peer review.

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-24-67/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-24-67/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-24-67/coif). The series “Supportive Care After Breast Cancer: Challenges and Opportunities” was commissioned by the editorial office without any funding or sponsorship. H.C.Y.W. and M.A.K. served as unpaid Guest Editors of the series. S.F.L. serves as the unpaid co-chair for the Palliative Radiotherapy Subcommittee of Annals of Palliative Medicine from October 2023 to September 2025. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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