In general, we observed that the male FTC family members found the social assessment via the CEGRM process to be feasible, acceptable, and useful. Our participants revealed that they were more emotionally connected to their families-of-origin and current nuclear families than to extended family. We saw few communication blocks or family schisms between the men and their relatives. Most men participated in our clinical research out of altruism.
Initially, we were concerned that the CEGRM process might not be as acceptable or useful for men as it had been in women from HBOC families as reported in previous publications [25, 33]. After completing the first few CEGRMs, we realized that the process was also working well with the men. Like the women that we had previously studied, the men were invariably cooperative, with mostly positive comments about the benefits of the CEGRM process, such as, "The CEGRM is very visual and physical; if you were just talking, you wouldn't have gotten all this," and "it [the CEGRM] helps to clarify relationships and priorities." Most men showed that they could quickly and easily grasp the concept and process of constructing the CEGRM, were comfortable with the interactive conjoint process, found it easy to talk about family and non-kin relationships in this active task-oriented context, and told a range of stories about selected aspects of their social relationships. However, the CEGRM was not for everyone, with one man confused about the purpose. Another participant, a traditional, elderly man, paradoxically stated, "I hate this sort of thing," after interacting in an animated way for an hour in the CEGRM process.
The construction time of the CEGRM depended on how expansive or guarded the men were in discussing their social milieu. The men varied widely in how much they perceived that they talked during the CEGRM process. Obviously, the man who reported talking 100% of the time was exaggerating on one level, but accurately reporting his subjective experience of being allowed to talk as much as he chose. The majority perceived that they talked more than half the time, which was a positive outcome of the process from our perspective of wanting to hear about their experiences in their own words and having the participants subjectively feel heard.
There was great intra- and inter-family variability in the parameters of interest, e.g., mood, communications, type and number of supports. Men asked to list friends, co-workers and others with whom they felt close often listed fewer non-kin than did women in HBOC families. Furthermore, the men might or might not give these friends the colored symbols denoting important social exchanges to the symbols designating their friends. This differed markedly from the women in HBOC and FTC families, for whom the decision to place the colored symbols was one of the criteria by which a friend was designated, e.g., "If I can't put a dot by these people, then they shouldn't be in my life."
Emotional impact of FTC
Our finding that most TC survivors from our multiple-case families were well-adjusted, with only a few reporting distressing emotional issues, is in keeping with the general cancer literature. In one study, from 9% to 27% of TC survivors presented with anxiety or depression . In a meta-analysis of mood disorder prevalence in cancer settings, there was less interviewer-defined depression and anxiety than anticipated in cancer patients, although a combination of various mood disorders occurred in 30-40% of hospitalized cancer patients . In a study of long-term distress in a sub-set of men with BRCA1/2 mutations, predictors of distress included higher baseline distress and being unmarried , whereas, most of our distressed participants were married and all but one were affected with TC. The sources of the reported distress have yet to be resolved [6, 36–38].
Nature of emotional closeness and self-disclosure
Men's emotional supports play an important role in social and emotional adjustment to cancer risk and/or diagnosis. From our CEGRM data, it seemed that the men's emotional closeness with others was integrally entwined with tangible and informational supports as well as shared activities, i.e., instrumental support. Lay views of closeness generally consider it to depend on open sharing of information about oneself, i.e., self-disclosure. "The open sharing of the self (self-disclosure) does occur regularly among male friends, albeit to a varying degree." . Specific elements of self-disclosure that may be important are the amount of personal information revealed, control over the conversational circumstances, topical breadth, and the emotional valence of the personal material disclosed. Since men often prefer topical discussions, it may take them longer to reach personally relevant information, e.g., we noted that many of our participants (who were either long-term survivors or their close relatives) considered themselves closest to long-term buddies from childhood, adolescence or young adulthood. Additionally, one participant remarked that it took a long time for him to make new friends after TC, given his workload, family obligations, etc. Indeed, while it seems by our observation that women with cancer reach self-disclosure sooner, men eventually do self-disclose emotion-laden information to those few people with whom they consider close. Perhaps researchers have not done enough longitudinal studies to capture men's longer time frame to reach this comfort zone.
Men's Action- and task-orientation
One participant with prior TC stated his action-orientation this way: "We men are task-oriented. We act first, get diagnosis, second opinion, treatment, all while juggling work and family life obligations and maintaining normalcy of routine and everyday living. We perform the tasks necessary to self-preserve and outwardly present an image of a normal existence. Only after some time passes do we get around to processing the cancer; it takes a very long time to process verbally."
This definition of normalcy contrasts sharply with breast cancer patients, who report having many opportunities to process their cancer treatment decisions and report wanting to finish reconstructive surgery to feel normal again so that they can move on .
Some gender theories of masculinity suggest that being verbal about one's feelings is threatening to men, because the traditional masculine gender role is defined by being hard and strong [41–44]. However, during the FTC CEGRM process, the men appeared to talk freely, being very clear about their support system, freely and rapidly placing colored dots with apparently prompt and straightforward decision-making about who gets which specific colors. Thus, the interactive CEGRM process appears to be acceptable to and compatible with many men's public persona.
Friendships play an important role in modern industrialized societies; friends, because of similarity in age, lifestyle and experience, are often useful at helping individuals adjust to many of life's challenges . Friends, especially long-standing childhood or college friends, could provide valuable socio-emotional and tangible support, helping each other adjust during the rigorous challenges such as having cancer. However, spending time talking and in shared social activities may be inconsistent with the identity that men want to convey, the image of strong, masculine men who need minimal support . This speculation has implications for future research and clinical care.
Cancer survivor identity and normalcy issues
Cancer survivorship can be both an internal personal identity and also an external social identity. Men and women differ regarding how much they embrace these survivorship identities. Some men in our study warmly embraced the TC survivor identity, while others wanted nothing to do with being a cancer survivor, implying that self-identifying as a survivor was equated to being a victim and, therefore, being weak. There was a sense of wanting to restore one's dignity after the stressors of cancer treatment, and to connect with others like oneself to relieve the profound loneliness of being out-of-step with one's age-peers.
Male gender identity and health
Despite the fact that more balanced gender role models are available for contemporary men, current research shows that men are still more likely than women to engage in dozens of health-related behaviors that increase the risk of disease, injury and death. Socialization continues to encourage risky behaviors for men and health promotion behaviors for women [46, 47]. Group norms also guide behavior by providing information about normal behavior in social environments and constrain behaviors considered feminine, deviant, or off-limits. As a result, more traditionally masculine men who perceive barriers to healthy behaviors are less likely to report healthy behaviors . As Courtney states in his editorial on men's health, men receive strong social prohibitions against doing anything that women do, and they are taught that health matters are women's concerns . Thus, when a man brags that he hasn't been to a doctor in years, he is simultaneously describing a typically masculine "health practice" and also presenting himself as a real man .
We have evidence that risky behavior norms play out in FTC families. For example, we previously learned that men's adherence to doing testicular self examination (TSE) is suboptimal even within high-risk FTC families, and that its performance depends on physician recommendation, their relationship with the family physician, and testicular cancer worry [49, 50].
Study limitations and strengths
We recognize some limitations to our data interpretation in this first attempt to investigate social exchanges of men in FTC families. Our findings have limited generalizability since the study population was relatively homogeneous, namely, a white, heterosexual, educated, research-oriented group of families. Ascertainment was undoubtedly influenced by self-selection bias of participants willing to complete extensive epidemiological, medical, and psychosocial evaluations and travel to the NIH Clinical Center. We were unable to make any inferences about causality or directionality of observed associations, due to the cross-sectional design of our study. Data were available only from male participants; we had the opportunity to assess only 5 women and did not have the opportunity to interview most spouses, relatives, or friends. The sessions were not audio-taped, which might have yielded enhanced accuracy of quotations and other interaction dynamics. Both investigators who coconstructed CEGRMs with participants were female; we do not know if a male investigator would have uncovered more, less, or different material. Finally, we have attempted to accurately portray participants' views of their relationships with others, but did not have the opportunity to obtain the perspectives of most other people designated by our participants as exchanging social resources.
We believe that this pilot study has a number of strengths, and that it contributes significantly to the cancer genetics psychosocial literature. It was a sub-study of a larger multi-disciplinary team effort which benefitted from our varied clinical and research viewpoints as well as our collective synthesis of impressions. We focused on men and testicular cancer, two topics rarely addressed in cancer genetics psychosocial studies. Furthermore, we provide novel results of a systematic data collection method, applying a psychosocial assessment tool that plays to men's strengths. For these reasons, our pilot observations deserve follow-up.
Clinical and counseling interventions
In light of findings from contemporary gender-study theories and findings of multiple factors affecting male health behaviors-such as seeking support and regular medical screening-it might be most effective for health education and genetic counseling interventions aimed at this population to be multi-modal. For example, educational programs might address health beliefs and knowledge; we are already providing this education about normal and abnormal testicular development and principles of inheritance within our FTC protocol . Different methods such as peer groups, online support chats, or even the CEGRM process might provide feedback to participants about their male peers' health behaviors, e.g., that a lot of men perform regular TSE. There are currently many new online and social networking resources available for young adults with cancer:
There are many ways of approaching strategies designed to facilitate coping with, and grieving over, testicular cancer . Approaches likely to be most successful would incorporate and target male values, e.g., put emphasis on information-seeking and promoting active problem-solving. Since men tend to be "instrumental" rather than intuitively emotional grievers , providers offering follow-up services might ask "What did you do?" rather than "How did you feel?" (Perry Garfinkle, http://www.NYtimes.com/2011/7/26/health). It would be important to facilitate group belonging and to normalize health-promoting behaviors. On a practical level, men also value adding financial advice and advocacy into counseling agendas.
While recommendations regarding the efficacy of TSE are not uniform (due in large part to the remarkably high cure rates experienced even by men with widely-metastatic TC), there is, nonetheless, general agreement about the value of early detection through screening being preferable to later diagnosis, since the latter increases the likelihood that more toxic treatments (i.e., combination, platinum-based chemotherapy) will be required in addition to surgical treatment. Young men could be taught not only to do TSE and to seek medical attention when they notice a bodily change, and also encourage their brothers and friends to do the same. Furthermore, education could be combined with emphases on well-being, resilience and healthy development, positive psychology trends becoming more common in contemporary medicine and counseling.
Perhaps policy makers and public health officials also could address some of the social circumstances contributing to men's higher mortality and lower lifespan such as developing and promoting "men's health strategies" to balance out damaging media, institutional, and other forces that shape men's risk-inducing self-concepts and behaviors.
On the interpersonal level, marital relationships can become vulnerable in the face of intense stress of serious illness like TC [6, 54]. Marriage and family therapy may be indicated for selected couples who have issues with body image, spousal emotional support and/or fertility concerns. However, we heard reports and saw the visual CEGRM evidence from our study participants that many FTC couples experienced supportiveness and closeness with their spouses as they worked through their TC experience. Feelings of heightened intimacy and bonding, satisfying sexual relations, and intimate involvement in the illness experience can contribute to overall adjustment [6, 54]. Single men, a vulnerable group, will also undoubtedly also benefit from the opportunity to process their experiences over time . Friendship relationships both in terms of long-term buddies from childhood and adolescence and those developed through members of a sports team, a comparatively neglected area of inquiry, could be further investigated as sources of social support, opinion molding and decision-making in familial cancer families as well as other male-associated cancers.