Men’s experiences of having breast cancer : a comparison with women’s experiences

Background: In the UK, men with breast cancer account for1% of all new cases of breast cancer with only 341 men receiving this diagnosis throughout the UK in 2008 (Cancer Research, 2010b). There is a lack of research on all aspects of men with breast cancer in large part due to the rarity of the disease. However it is the psychosocial effects of receiving a breast cancer diagnosis, and the subsequent support available to men, that has in particular been ignored. To date, no study compares men’s and women’s experiences of having breast cancer. Furthermore, breast cancer is arguably at the most extreme ‘female’ end of a spectrum of illnesses that men can experience, and is likely to pose particular challenges for men’s identities, which may have profound implications for their use of health services, attitudes to treatment and living beyond their cancer diagnosis. The aim of this study therefore is to compare men’s and women’s experiences of having breast cancer and what effect, if any, having a ‘female’ cancer has on a man’s identity. Methods: The data on men’s experiences of breast cancer derive from interviews with 19 men with breast cancer in which semi-structured questions and prompts explored: what prompted them to seek help for their breast symptom; their own reactions to having breast cancer; the reactions of family, friends, colleagues and health professionals; their experience of treatment; the embodied effects of treatment and living beyond their breast cancer diagnosis. These data were collected using the methods employed by researchers at the Health Experiences Research Group in Oxford, see www.healthtalkonline. org, so that a) they could contribute towards a new module on men’s experiences of breast cancer, and b) they could be compared with existing interviews on women’s experiences of breast cancer. The transcripts of 23 interviews with women who had breast cancer were made available for secondary analysis. The interviews with men with breast cancer were undertaken in such a way that direct comparison was possible. Analysis of both collections was undertaken using the framework approach to compare the men’s and women’s experiences of having breast cancer. Findings: The findings demonstrated both similarities and differences between men’s and women’s experiences of having breast cancer. First, the help-seeking practices of the men and women were found to be similar. The men were largely ignorant that men could get breast cancer, but this did not prevent some from attending their doctor. In turn, knowing that women can get breast cancer did not ensure women sought help for their breast symptom straight away. Help-seeking was found to be a complex process for both men and women that shared some push/pull elements that influenced their help-seeking. The disclosure practices of the men and women were found to be similar and changed over time. Men used ‘strategic announcing’ to educate other men of the risk of breast cancer in men. The women in this study changed their disclosure behaviour to either protect their families from their illness, or themselves from negative encounters with people. The men also described feeling they had to disclose their illness when treatment side effects made them look ill, whereas some women described using aids such as wigs and prostheses to conceal changes in their appearance. Contrasting experiences of healthcare were reported by men and women. The women were often given a treatment choice, could access information at different points throughout their treatment and had a variety of support networks. In contrast, the men were given few choices in their treatment, little or female-specific information, and reported limited sources of support. The men recounted negative experiences in the clinic and ward setting. They were mistaken as supporters not as the patient, experienced suspicion from female patients and were not given adequate resources to manage their treatment. In contrast, most women had positive experiences during their treatment and felt supported within the healthcare environment. There was some evidence to suggest the effect on their closest relationships was similar for men and women with breast cancer. Most married men and women suggested their relationships had remained good and in some cases improved, adapting to physical changes and expressing their affection in other ways. The wives of men with breast cancer played a key role during their experiences of help-seeking, disclosure, offering support and retrieving information. Most of the men in this study appeared to successfully renegotiate their masculine identities to incorporate their breast cancer experiences. Some men felt their new role was to educate and ‘spread the word’ that men can, and do, develop breast cancer. A renegotiated traditional male stereotype was constructed including traditionally female characteristics to present an identity that enabled the men to cope with negative experiences within their communities and the healthcare setting. Conclusions: There are similarities in the experiences of men and women with breast cancer. However, a lack of awareness men can develop breast cancer and the rarity of the disease has led to the development of female specific services and treatment. Greater social awareness and gender-sensitive healthcare is necessary to improve the experiences of men with breast cancer.