In contrast with the industrial scale of investigations into psychosocial aspects of female breast cancer, studies on MBC are still at the level of a cottage industry. Nevertheless this vacuum is now becoming gradually occupied by more rigorous, statistically robust evidence that will enable a holistic approach to the needs of men with breast cancer. Studies have largely examined two aspects: assessment and management of risk together with psychosocial aspects of the diagnosis and treatment of MBC.

The majority of males will not consider themselves at risk of MBC but with increasingly sophisticated genetic screening a target group can be identified. A Canadian study assessed 59 male carriers of BRCA1/2 mutations to determine their reasons for asking for counselling and testing [1]. Additionally the extent of family involvement, subjective risk perception, participation in screening and patient satisfaction was sought.

What emerged was that the main reason for wanting counselling was concern about their daughters’ risk of breast cancer. The majority, 88%, had discussed breast and ovarian cancer with their family and almost half, 47%, had considered prophylactic surgery. Despite believing that they were at increased risk of development of cancers of the prostate, breast, colon and skin only 43% changed the pattern of prostate screening after being told that they were carriers of a pathological mutation. As a result, 55% suffered intrusive thoughts about developing cancer in the future. The authors stressed that there was inadequate information about men’s experiences available to the medical profession.

Strømsvik et al. interviewed 15 Norwegian BRCA1/2 males and in the first interview they were seen alone and in the second, 7 attended with female partners [2]. On being told they were mutation carriers all the men admitted to having major emotional reactions including fear of malignancy and guilt because they deemed themselves responsible for putting their offspring at risk. Partly because of this they wished to keep this information private. They were unable to discuss the situation with other men and turned to females for support. The lack of social support meant that they were psychologically vulnerable.

To examine the extent and nature of disseminating results of BRCA1/2 testing to offspring Hallowell et al. questioned 17 MBC patients, 8 partners and 4 adult children [3]. The interviews examined the experiences of cancer and genetic testing, reasons for undergoing genetic testing and communication of results and to the immediate family. In terms of the latter both MBC patients and their partners felt it was their responsibility, rather than that of the doctors, to inform their children of the results. This could be complete disclosure, limited communication or total secrecy based on their perception of children’s rights and parental wish to shield their children from potentially angst-provoking information.

In an examination of perceptions about MBC, 36 Malayan male university students who had been randomly selected were interviewed [4]. Most were aware of a low risk of MBC but believed that the major cause was cigarette smoking. Although the majority would urge family members to practice breast self-examination this was deemed unimportant in men because of the low risk. This indicated that even among intelligent university students there were major misconceptions about the cause and early detection of MBC.

Hesse Biber conducted an online survey of 101 men who had been found to be BRCA mutation carriers [5]. A subset of 26 participated in an in-depth interview including a Genetic Testing Motivation Scale, together with the Bem Sex Role Inventory (BSRI). The sample was predominantly white (96%) and upper/middle class (87%). The main reason for seeking genetic testing was family risk for 45 (70%), medical considerations in 14 (22%) and social support for 5 (8%). Men who were aged ≤50, or without children, were more likely to give medical reasons for their choice. With regard to perception of stigmatisation, this occurred more frequently in those aged ≤50. Vulnerability was more likely in married men and working professionals were more worried than the retired.

The situation may be worsened by inertia within medical organisations. Chun et al. examined compliance with the recommendations for genetic testing issued by the National Comprehensive Cancer Network (NCCN) within the Veterans Administration (VA) in the US [6]. Using the VA Central Cancer Registry together with details of BRCA test orders from Myriad Genetics, they found that, of the 462 Veterans who met NCCN criteria, only 126 (27%) were referred for counselling or testing. Of the 98 VA Medical Centres, there were no referrals for genetic testing from 49 (50%). Furthermore those cases with second primary cancers were even less likely to be referred for counselling or testing.

In 1991, John W Nick died of metastatic MBC and subsequently his daughter set up the John W Nick Foundation (www.​malebreastcancer​.​org). The aim of the Foundation is to increase awareness of breast cancer in men. This was the first attempt to provide an accessible on-line resource specifically aimed at MBC. At that time the psychological aspects of such a diagnosis were largely unexplored.

In a small pilot study from Wales, 6, MBC patients took part in in-depth interviews which although unstructured nevertheless focussed on the physical and psychological impact of the diagnosis and treatment [7]. Interviews took place in the patients’ homes with or without the presence of a partner who was encouraged to participate. Seven major concerns emerged: delay, shock, stigma, body image, causal factors, information paucity and lack of emotional support. This work was expanded into four focus group discussions with 27 participants with MBC and FBC, together with Healthcare professionals [8]. After recording and transcribing the discussions were examined by thematic analysis which yielded four major themes: diagnosis, disclosure, support and male-based information. In this study, delay had not been an issue but there was some stereotyping by health professionals who deemed men to act stoically when given the diagnosis whereas females were more emotional. Possibly as a result of self-selection, disclosure was not a problem for the participating males although some did not reveal their scars in public. Most of the support came from partners and the men did not want specific MBC information but rather an incorporation of male-relevant information into FBC factsheets.

The same group then went on to administer cross-sectional questionnaires to 161 MBC cases [9]. Questionnaires including HADS (Hospital Anxiety and Depression Scale), IES15 (Impact of Events Scale), BIS (body image scale), COPE42 (coping) and stress appraisal in relation to activity, appearance and pain. Clinically treatable levels of anxiety were reported by 6% but only 1% had depression. High levels of cancer-associated distress were reported by 23%. Anxiety was mostly associated with fear about the future whereas symptoms of depression were largely the result of altered body image. Body image, avoidance coping, uncertainty, and lack of gender-specific information were major contributors to cancer-related distress.

The sense of anxiety and isolation was exemplified in a case report from Smolin and Massies [10]. Mr. T noticed right nipple retraction but was reassured by his doctor. One year later another doctor referred him to a surgeon and he underwent right modified radical mastectomy for a 3 cm invasive cancer with 7/25 nodes involved. The tumour was CER/PR positive and he received adjuvant chemotherapy, adriamycin, cyclophosphamide, paclitaxel and cisplatin, followed by tamoxifen. This was followed by a stem-cell transplant after which he was referred by the medical oncologist for a psychiatric opinion because of his fear of recurrence.

He gave a long history of anxiety and depression which had been particularly severe when his mother died of breast cancer and worsened by his father’s subsequent re-marriage. He had dropped out of university but had several reasonably rewarding jobs although he had always been insecure feeling that “the bottom might fall out at any time”. He had a twin brother and a girlfriend but the relationship was described as conflictual although both had given support during his treatment. A diagnosis of adjustment disorder with mixed emotion was made and he was referred for psychotherapy which took place 3–4 times monthly and concentrated on helping him to adjust and have a more fulfilling existence. During the first year, because of side effects of tamoxifen – depression, loss of libido and leg cramps he had temporarily discontinued but the situation improved when the dosage was reduced to 10 mg daily. During the second year he was more compliant with treatment and following a financial windfall his concerns shifted from fear of recurrence to concern about other aspects of life including expansion of his business, a desire to marry and the possibility of breast reconstruction. The authors considered that his reactions to the diagnosis were similar to those of younger single women with breast cancer.