Objective: This article reports on the findings of a qualitative study that explored the awareness and knowledge of male breast cancer among English-speaking men. The primary goal was to elicit information to guide both clinical practice and the development of gender-specific educational interventions.
Methods: Interviews with 28 adult men, all of whom had no history of breast cancer themselves but had at least one maternal blood relative with the disease, were conducted and analyzed, using qualitative methods, to describe participants' awareness of male breast cancer, their knowledge of the disease, and how they thought awareness of male breast cancer could be increased in health care providers and the lay public.
Results: Nearly 80% of participants weren't aware that men can get breast cancer; and although all were at higher risk given their positive family history, all reported that their providers had never discussed the disease with them. A majority couldn't identify any symptoms other than a lump in the breast. About 43% voiced concerns that a diagnosis of breast cancer would cause them to question their masculinity. Participants also suggested ways that men, as well as providers and the lay public, could be better made aware of and educated about their risk for this disease.
Conclusion: This study provides much-needed insight into men's awareness and knowledge of male breast cancer. While further research with larger samples is needed, these findings offer a starting point for the development of evidence-based, gender-specific, health promotion and disease prevention interventions for men.
Keywords: male breast cancer; breast cancer, male; breast neoplasms, male; men's health; patient education; qualitative research
Breast cancer in men is uncommon, accounting for less than 1% of all breast cancers and less than 1% of all carcinomas in men.1 Incidence trends are less clear. One large U.S. population-based study by Giordano and colleagues revealed that, between 1973 and 1998, the incidence of male breast cancer increased by 26%, while that of female breast cancer rose by 52%.1 More recently, the American Cancer Society (ACS) has reported that although the rate of female breast cancer has been declining,2 "the number of breast cancer cases in men relative to the population has been fairly stable over the last 30 years."3 The ACS also estimates that, worldwide, approximately 1.3 million women are diagnosed with breast cancer annually.4 That figure has disturbing implications for men as well, since 15% to 20% of men with breast cancer have a blood relative with a history of the disease.5,6 For both sexes, the incidence of breast cancer varies by geographic location, "with higher rates in North America and Europe and lower rates in Asia."6,7
Unfortunately, male breast cancer has received relatively little attention in both the primary health care community and the general population. Both groups lack an awareness of the disease and are often ill-informed about its potential physical and psychological implications.8 Whether because breast cancer in men is uncommon or because people often assume that men can't get the disease, male breast cancer has been widely ignored by the lay public, the media, and many health care professionals. New public health initiatives are needed to educate the public and health care providers, to raise awareness and facilitate early detection. If men knew they might be at risk for developing this disease, they might be more likely to learn its signs and symptoms, perform routine breast self-examination, and seek care without delay if signs and symptoms arise.
Differences in how breast cancer affects men and women are evident not only physically but also psychosocially. Probably because the disease is often perceived to be "a woman's disease," there has been little research into the perspectives and needs of men with breast cancer. This qualitative study used a descriptive study design to explore awareness and knowledge of male breast cancer among English-speaking men. It focused primarily on a specific subgroup: adult men with no history of breast cancer themselves, but who have at least one maternal blood relative with the disease. It was in part inspired by the work of Kiss and Meryn, who have sought to better understand "the effect of gender on psychosocial differences in men and women with prostate and breast cancer, respectively."9
Men with breast cancer are significantly more likely to have hormone receptor-positive tumors, to have nodal metastases, and to be diagnosed at a more advanced stage than are women with breast cancer.1 Men with breast cancer also have a higher occurrence of invasive ductal carcinoma-it accounts for "at least" 80% of all cases of male breast cancer, according to the ACS,3 and some studies have found it present in as many as 87% of such cases.1 Breast cancer in men is more likely to start near, and spread to, the nipple.3
Men are typically diagnosed at an older age than are women. One large study found that the median age at diagnosis was 67 years for men and 62 years for women1; another study determined that the mean age at diagnosis was 65 years for men and 61 years for women.10 However, breast cancer has been reported in men ranging in age from five to 93 years.5
Risk factors. Genetics research is providing mounting evidence that men who have a relative of either sex with a history of breast cancer are themselves at higher risk for the disease.5, 6, 11-13 Research also indicates that from 4% to 40% of all cases of male breast cancer are due to mutations in the tumor-suppressing genes known as BRCA2 or (less often) BRCA1.6,14 There's evidence that by age 80 a man with a BRCA2 mutation has a 7% risk of developing the disease, which is higher than that for men in the general population.14,15 It's worth noting that having a BRCA2 mutation is also associated with a higher risk for other cancers, including ovarian and prostate cancers.3,14
Research suggests that some risk factors for breast cancer, particularly estrogen receptor-positive breast cancer, may pertain to both sexes; but more research is needed to clarify this.16 Suspected risk factors for male breast cancer include older age; high alcohol consumption; conditions that can cause or are associated with hormonal imbalances (such as obesity, liver disease, and Klinefelter's syndrome); and treatments that alter normal male hormones (such as estrogen treatment for prostate cancer).3 Other possible risk factors include a history of testicular disorders (such as cryptorchidism or mumps orchitis) or of radiation exposure.3,17 One recent study found that a history of bone fracture was associated with increased risk of breast cancer in men ages 45 years or older.18 Certain occupational factors, such as working in hot environments or with gasoline, may also increase risk.3 And many believe that a cluster of more than 20 cases of male breast cancer identified among U.S. Marines who were based at Camp Lejeune, North Carolina, between the 1960s and the 1980s can be attributed to contaminated water there, although Marine Corps studies failed to establish a link.19,20
Despite this extensive list, there's little evidence that men are aware of these risk factors. In one study, researchers reportedly interviewed 24 men, each of whom had a first-degree female relative known to have a BRCA1 or BRCA2 mutation.21 Although all of the men had been told of their relative's genetic test results, only 18 remembered being told-an indicator that men experience "a level of cognitive and emotional distance" from the genetic testing process. Of these 18, only five correctly stated their chances of also having the mutation; nearly half (seven) didn't believe that having it increased their chances of having the disease.
Diagnosis and treatment. There are no standard clinical practice recommendations for breast cancer screening in men. Even in cases of men with known risk factors, clinicians typically don't perform breast examinations, nor do they advise regular breast self-examinations. The ACS has identified important differences in the male and female breast that can affect early detection3:
Because men have very little breast tissue, it is easier for men and their health care professionals to feel small masses (tumors). On the other hand, because men have so little breast tissue, cancers do not need to grow very far to reach the nipple, the skin covering the breast, or the muscles underneath the breast. So even though breast cancers in men tend to be slightly smaller than in women when they are first found, they have more often spread to nearby tissues or lymph nodes.
That said, the signs and symptoms of breast cancer in men are essentially the same as in women, and include a lump or swelling in the breast area, reddening or dimpling of the skin or nipple, nipple discharge, and nipple inversion. Diagnostic procedures, such as clinical breast examination, conventional or digital mammography, ultrasound, and needle or surgical biopsy, are also essentially the same for both sexes.
There has been considerable research on the treatment of male breast cancer. Treatment options are similar to those used to treat female breast cancer; the first-line choice usually depends on the stage of the cancer at time of diagnosis. However, men with breast cancer are often diagnosed at a more advanced stage of the disease than are women. Although for any given stage of breast cancer, men and women have comparable survival rates, it's also true that cancers found later require more aggressive treatment and generally have poorer prognoses than those found earlier.3
The four most common treatments for male breast cancer are surgery, chemotherapy, hormone therapy, and radiation therapy. In men, surgery usually means a modified radical mastectomy-removal of the breast, the lymph nodes under the arm, the lining over the chest muscles, and possibly a portion of the chest muscles-although a breast-conserving lumpectomy might be an option in some cases.22 Because men with breast cancer are more likely to have hormone receptor-positive tumors, men typically have a positive response to treatment with hormonal agents such as tamoxifen (Soltamox).3,23 However, because current hormone therapies are based on studies of female breast cancer patients, additional research with male breast cancer patients is needed to better understand how hormonal agents work in men.
WHAT PROMPTED THIS STUDY
Literature search results. To learn what's currently known about men's knowledge of male breast cancer and their risk of developing the disease, I conducted a literature search for articles published in 2007 using PubMed, Ovid, and CINAHL. Search terms used were "male breast cancer," "breast cancer in men," and "breast neoplasm-male." Of the 1,697 articles reviewed, only 52 (3%) addressed male breast cancer in the United States; the remaining 1,645 articles focused on male breast cancer in other countries.
Despite the large number of articles found, the topics were limited in scope. Epidemiology and treatment of male breast cancer were major foci. Two studies sought to understand the personal experiences of men who have or have had breast cancer.24,25 Only two studies addressed the information needs of men with regard to male breast cancer.25,26 Information on what the general public knows about male breast cancer was almost entirely lacking. Surprisingly, there was even little research concerning men who are at higher risk for breast cancer.
Only one study, conducted in the United Kingdom, examined the information needs of men with breast cancer. Iredale and colleagues analyzed data from interviews with 161 men with the disease, and concluded that while the verbal and written information provided to the men was helpful, much of it wasn't relevant because it was specific to women with breast cancer.26 For example, one man reported that the information explained how to select a proper brassiere. The authors recommended further research to determine men's information needs so that gender-appropriate educational materials could be developed.
Iredale and colleagues' work was part of a larger study investigating psychosocial distress, in which the 161 participants also completed a cross-sectional questionnaire that included measures of anxiety and depressive symptoms, cancer-specific distress, and body image.24 Almost one-fourth (23%) reported traumatic stress symptoms specific to having breast cancer. In a small, qualitative study of men with breast cancer, Donovan and Flynn found that "the idea of living with a feminized illness was very distressing and stigmatizing for some men."25 They reported that some study participants experienced the disease and its treatment as an "assault upon their sense of gendered self," resulting in significant changes to body image and sexuality; indeed, one of the themes identified was "a contested masculinity." One man said, "They [other men] would laugh at you if they saw it [mastectomy scar]. Some people think that a man with breast cancer cannot be a 'real' man."
In short, the literature search turned up intriguing but limited information about male breast cancer; I wanted to learn more. This study sought to determine what men know about breast cancer and to offer new insight into men's perceptions of male breast cancer. The primary goal was to elicit information to guide both clinical practice and the development of gender-specific educational interventions.
The theoretical framework for this study-critical social theory-takes into consideration the social context of the lived experience of the participants. Subjective human experience has often been ignored as a source of knowledge. But critical social theory rests on the conviction that "no aspect of social phenomena can be understood unless it is related to the history and social structure in which it is found."27
Hegemonic (traditional) masculinity, a concept from gender studies, also helped guide this study. Hegemonic masculinity has been defined as the idealized, socially dominant concept of masculinity at a given place and time.28 It refers to the fact that culture shapes our sense of what's "masculine" (and for that matter, what's "feminine")-and this in turn affects relationships between men and between men and women. As Donovan and Flynn's findings indicate, beliefs about masculinity also influence men's physical health. Courtenay and colleagues state that men who "adopt traditional or stereotypic beliefs about masculinity have greater health risks than their peers with less traditional beliefs,"29-in part because they're less likely to practice good self-care and more likely to engage in risky behaviors such as smoking.30 Psychological health is also affected. Gillon writes that in times of crisis, many men will avoid asking for help because "help-seeking denotes vulnerability, failure and hence weakness, attributes that run contrary to the terms of hegemonic masculinity."31
A purposive sample of self-identified English-speaking men, ages 30 years or older, without a personal history of breast cancer themselves but with at least one maternal blood relative with a history of breast cancer, were recruited from a large southwestern city (Denver) and its suburbs. "Maternal blood relative" was defined as a mother, sister, brother, maternal aunt or uncle, or maternal cousin of either sex. This study was approved by the Colorado Multiple Institutional Review Board. A total of 28 men participated in this study; of these, 14 self-identified as white non-Hispanic, nine as black or African American, four as Hispanic or Latino, and one as Asian or Pacific Islander. Ages ranged from 30 to 60 years. Occupations varied from blue-collar workers to professionals, including a physician and two RNs. All of the men reported having at least one maternal blood relative who'd been diagnosed with breast cancer. Sixteen (57%) identified their mothers as that relative. All of the men identified their sexual preference as heterosexual. (For more demographic data, see Table 1.)
|TABLE 1. Participant Demographics|
Recruitment and consent procedures. Recruitment flyers were posted in local community businesses and churches. The flyer was also distributed through the University of Colorado Denver's research-subjects-announcements listserv and printed in local community newspapers (including one for the area's large Spanish-speaking population, although it publishes in English). Men who met the inclusion requirements contacted a member of the research team by telephone. Prospective participants were screened with the questions "What is your age?" "Have you ever been told that you have breast cancer?" and "Who in your family has or had breast cancer?" If the prospective participant met the inclusion criteria, a time and place were arranged for completing the informed consent procedure and conducting the interview. Once consent was obtained, the participants were asked to select a pseudonym for identification purposes and to complete a brief demographics form.
Data collection. Participants were asked a series of 15 minimally structured questions, starting with, "Were you aware that men could develop breast cancer?" Several questions were supplemented with further probing questions or statements the interviewer could use, if needed, to elicit additional information before proceeding to the next question. For the complete list of interview questions, go to http://links.lww.com/AJN/A16.
Analysis. All interviews were transcribed verbatim by a member of the research team. The transcripts were compared and similarities identified. Transcripts were reviewed by the female primary investigator (me), a male research assistant, and a female colleague with qualitative data analysis experience. The approach was inductive, using specific pieces of information to develop broader themes. Interpretation of findings was based on both contextual analysis and frequency of similar responses to the interview questions.
The original plan was to analyze the individual in-person responses to the interview questions, coding the data using codes I developed after direct examination of the data. But because many of the men responded to questions briefly and didn't elaborate, I decided to aggregate all responses to each of the questions and summarize the findings. From these clusters, themes emerged as the researchers recognized repetitions within and across the interviews. These themes were "awareness," "knowledge," and "educating others." Typically, qualitative researchers use participants' actual words in naming themes, and I did this as well in naming the overarching theme, "They haven't told me anything," described below.
Rigor. Member checking is a way to strengthen the rigor of qualitative studies. Copies of the study findings, with the investigator's interpretation and emergent themes, were shared with five randomly selected study participants for review. All five returned the summary of the findings without making any significant changes and all agreed that the themes were an accurate representation of their interview responses.
Awareness. Twenty-two men (79%) reported that they weren't aware, and were surprised to find out, that men could get breast cancer. One stated, "Men get prostate cancer and women get breast cancer." Another said, "Men don't have breasts, they have chests." Although at higher risk for developing breast cancer than the general male population, all 28 reported that their health care providers had never discussed male breast cancer with them. Thus, the overarching theme that emerged- "They haven't told me anything"-was conveyed by 100% of participants.
Knowledge. Two men reported some knowledge of breast cancer in men. One reported that while his mother was undergoing treatment for breast cancer, he'd asked her physician whether men could develop breast cancer and the physician had said yes. Another man reported that he'd found a lump in his breast and had undergone diagnostic testing for breast cancer; the lump was found to be benign. When asked "How do you believe breast cancer is detected in men?" 16 men responded that it's usually detected by "finding a lump." One also said "soreness or enlargement-but my first thought would be that I pulled a muscle," and two mentioned mammograms. Twelve men reported a lack of knowledge, saying "I really don't know," "I don't think they do mammograms on men," or "I don't have a clue." One added, "They find it on the autopsy table." When asked what the symptoms of breast cancer are in men, 21 men said in essence, "a lump, the same as in women." None of the study participants were able to identify other symptoms of breast cancer in men, such as nipple discharge.
There was one question to which men's responses differed markedly. When asked whether being diagnosed with breast cancer would cause them to question their identity as men, 16 (57%) indicated that it would not; their responses showed that they didn't associate cancer with gender. But 12 (43%) indicated that being diagnosed with breast cancer might cause them to question their masculinity. One participant stated, "Masculine men most likely will not get breast cancer, only men with feminine tendencies [can get it]." One participant who'd found a lump in his breast stated, "I felt like all the testosterone drained out of my body." Another man reported, "I wouldn't tell anyone, I would be afraid of the stigma." We also noted that none of the men interviewed by the male research assistant said they would question their masculinity if diagnosed with breast cancer, whereas several men interviewed by the female primary investigator did voice such concerns.
Educating others. Participants were asked to share their ideas about how health care providers might better educate men about male breast cancer. All of the men stated, in essence, "Just get the word out!" Every participant talked about how important it is for people to know that men can get breast cancer, and that it's imperative to educate men who have a family member with the disease. The men suggested producing brochures and pamphlets that could be left in places men frequent, such as sports bars, bowling alleys, and barbershops, and at professional basketball and football games. The participants also recommended placing signs on buses and including more information more prominently in the media during National Breast Cancer Awareness Month (October) as well as year-round to carry the message that breast cancer can occur in both men and women.
See Examples from the Raw Data for participants' responses to selected interview questions.
The majority of men in this study weren't aware that men could develop breast cancer. Although all of the participants are at a higher risk for developing breast cancer than the general male population, all reported that their health care providers had never discussed male breast cancer with them. Socioeconomic status, as indicated by occupation, and religious affiliation weren't indicators of participants' awareness or knowledge of male breast cancer, although three men were health care providers. One participant, a physician, stated that male breast cancer was never addressed during his medical training.
It was anticipated that each interview would take from 30 to 60 minutes to complete; but the majority of interviews took from 15 to 30 minutes because many participants responded to questions briefly and with little elaboration. Coates reported that men often have difficulty expressing emotions and vulnerability, even when among friends.32 It's likely that such difficulty would also affect what men might say to researchers during interviews. In this study, interviewers asked participants whether they would have felt more comfortable discussing male breast cancer with an interviewer who was female (if the interviewer was male) or one who was male (if the interviewer was female); all of the men said the sex of the interviewer didn't matter. However, since only men interviewed by the female interviewer said that a diagnosis of breast cancer might cause them to question their masculinity, it's possible that participants were less comfortable disclosing such concerns to a male interviewer.
One participant's response to the question about how male breast cancer is detected-"They find it on the autopsy table"-suggests that some men have fatalistic views about breast cancer. It's important for health care professionals to understand that interventions designed to educate women about breast cancer aren't necessarily effective for men. Providers should be encouraged to consider how men tend to view this disease; when educating patients it's not enough to simply change the word "female" to "male." Educational materials should be sex specific and gender appropriate.
While there are no standard guidelines for breast cancer screening in men, the ACS states that mammography "might be useful for screening men with a strong family history of breast cancer and/or with BRCA mutations."3 It's my belief that providers should discuss breast cancer with all men, especially those who have a family history of breast, ovarian, or prostate cancer, or have other known or suspected risk factors for breast cancer. During routine physical examinations of these men, providers should consider including a clinical breast examination and advising monthly breast self-examinations.
Limitations of this study include its small sample size and limited diversity. Further research with a larger, more racially and ethnically diverse sample of men is needed. This study also recruited participants only from an urban area; and although the area has a large Spanish-speaking population, recruitment was conducted only in English. Future research should include men from rural communities and those whose first language is not English.
This study represents a first step toward an improved, evidence-based understanding of men's perceptions of and experiences with male breast cancer. It's hoped that these findings will induce providers to consider gender when developing health promotion and disease prevention interventions, and will encourage them to improve their communication with male patients who have a family history of breast cancer. As there may be cultural differences in how men of different racial or ethnic backgrounds view male breast cancer, further quantitative and qualitative research with larger, diverse samples is needed.
There are indications that male breast cancer is starting to gain increasing attention. Indeed, a later search for articles addressing male breast cancer in the U.S. population, published from January 2008 through May 2010, yielded 264 articles in the Ovid database alone-a marked increase over the 52 such articles found during the initial search. But many health care professionals and funding agencies aren't yet convinced that male breast cancer is a significant problem worth researching. Nurses can be instrumental in improving efforts to educate the public about this disease and should be encouraged to promote breast health in both women and men, particularly those at higher risk for developing breast cancer. To learn more, and for a list of Web sites and private foundations dedicated to addressing male breast cancer, see Resources.
American Cancer Society. Breast Cancer in Men: Detailed Guide http://www.cancer.org/Cancer/BreastCancerinMen/DetailedGuide/index
John W. Nick Foundation http://www.malebreastcancer.org
Mayo Clinic. Male Breast Cancer http://www.mayoclinic.com/health/male-breast-cancer/DS00661
Menstuff, The National Men's Resource. Breast Cancer in Men http://www.menstuff.org/issues/byissue/breastcancer.html
National Cancer Institute. Male Breast Cancer Treatment PDQ http://www.cancer.gov/cancertopics/pdq/treatment/malebreast/Patient (patient version)
http://www.cancer.gov/cancertopics/pdq/treatment/malebreast/HealthProfessional (health professional version)
INVITATION TO SHARE YOUR EXPERIENCE WITH MALE BREAST CANCER
If you're a man at risk for or with a history of breast cancer, or a family member of a man who died from breast cancer, and are willing to share your experiences with the author for a book she's writing, please contact Eileen Thomas at firstname.lastname@example.org.
For 34 additional continuing nursing education articles on research topics, go to http://www.nursingcenter.com/ce.
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