‘Marginalised malignancies’: A qualitative synthesis of men’s accounts of living with breast cancer

Quincey K, Williamson I, Winstanley S

April 2016

Social Science & Medicine 2016;149:17-25

Most men had little knowledge of breast cancer in men prior to their diagnosis, and many felt that health professionals also lacked knowledge.

Participants generally reported seeking care when symptoms began. However, many endured multiple consultations before they were “taken seriously.”

Most were “shocked” when they were diagnosed with breast cancer, as were significant others and some health professionals. Some men perceived their diagnosis to be delivered insensitively with little offer of professional psychosocial support.

Men were often selective about who they disclosed their diagnosis to, positioning breast cancer as being socially unacceptable for men.

Despite this concern most felt it “easier if people knew.” Many identified their female partners as being a key source of support, particularly due to their pro-active approach to seeking care before and after diagnosis.

Despite psychosexual well-being disruptions, men reported maintaining a close relationship with their partner. Few men reported lacking personal support.

Men encountered several difficulties with the healthcare provided to them, perceiving these to stem from there being “no protocol” for men with breast cancer. Some felt their concerns and questions about treatments and side-effects were not adequately addressed.

Men’s information needs varied and many chose not to read the printed resources offered to them and instead looked online. Most stated a preference for information relevant to men to be available in already existing sources rather than the development of male-specific resources.

Men typically reported having little input into treatment decision-making with their physician often offering one approach only.

However, many stated they were happy to “take a backseat.” Few men were informed about support groups or were acquainted with other male survivors; most did not wish to attend such groups or to engage in formal therapies.

Almost all the men described breast cancer as a “female illness.” Men perceived their breast cancer as a challenge to their masculinity and as changing how others perceived them.

Those with better work-life balance and fewer financial concerns appeared to adjust better to their illness and were able to reconceptualise their definition of masculinity.

Men reported that they learned to live with their changed body (due to surgery) over time. Some participants were “embarrassed” by their scars while others thought it was “not something to be ashamed of;” it was generally more important to men that they felt well. Despite this, many men reported it necessary to hide their scars from others to “save embarrassment” and deter unwanted questions.

Most men stated that breast cancer was more significant for women and had less of an impact on men, despite consistently stating that men should be less marginalised within breast cancer awareness campaigns and care.

Participants suggested that both the public and health professionals needed to be better educated about breast cancer in men. Being labelled a ‘special case’ by health professionals was not welcomed.

All men commented on the need to improve the experience of breast cancer for men. These improvements were shaped as being small refinements to already existing practices at all levels of care rather than radical changes.

Regardless of whether men actually choose to participate, the majority stated that all men should have the opportunity to attend support groups and to engage with other patients, particularly male survivors.

Breast cancer occurs in men and women for similar biological reasons but socially the disease is considered very differently for each gender.

This paper reviewed and synthesised eight studies (92 accounts) that used qualitative research methods to examine men’s experiences of breast cancer.

The findings of this review indicate that men are marginalised within breast cancer by both health professionals and themselves. Health professionals need improved training to provide individualised care, particularly to patients who don’t identify with the ‘pink ribbon’ model. Men need access to information and support that addresses their needs but does not position them as ‘other’ in the breast cancer space.

This synthesis did not account for the different interpretations likely to have emerged from the use of various methods (e.g. interviews, focus groups) and populations (men only versus men, health professionals and significant others; only the men’s accounts were included in this review) within the reviewed studies.

Issues around marginalisation may have been simplified in this review due to the lack of inclusion of men who already experience institutional discrimination due to their sexuality, ethnicity, and/or social background.