Young Men With Cancer

A Literature Review

Heather J. Campbell-Enns, MSc; Roberta L. Woodgate, PhD, RN

Disclosures

Cancer Nurs. 2013;36(1):E36-47. 

In This Article

Major Themes

Analysis of the 16 studies revealed 5 predominant themes focusing on the experiences of younger men with cancer.

Manhood in Question

The first theme describes the impact of cancer on the masculine identity and the emotional results of this impact for young men with cancer. This masculine identity is characterized by the qualities of hard work, physical strength, and activity.[11,18] Mesquita et al[18] conducted a qualitative study in Brazil in which the authors interviewed 12 men with cancer diagnoses to describe the experience of cancer treatment. Thematic analysis showed descriptions of the transitions experienced by men with cancer. These men described their lives before cancer as ''macho,'' and their identities were strongly tied to their occupations. They explained that, as men, they needed to be strong and did not want to appear weak or vulnerable in any way. The arrival of cancer in the lives of these men interfered with their working life. This interruption in work has produced a major disruption in their masculine identity, bringing feelings of vulnerability and changing their beliefs and behaviors about their masculinity.

Cecil et al[11] conducted a qualitative study to identify issues in cancer that present challenges to male identity. The authors interviewed 8 men, aged 36 to 70 years, in Northern Ireland with a history of cancer. Similar to Brazil's study,[18] these men in Northern Ireland described the change in their lives brought by cancer especially with respect to a shift in their identities. They had known themselves as providers and protectors in their families before the arrival of cancer, but after the cancer diagnoses, these men experienced work interruption and a feeling of a loss of control of their family finances. The masculine identity of provider and protector was altered to feeling cognizant of being needy of a range of assistance–financial, physical, and emotional–thus creating worry and anxiety for these men with cancer. Cecil et al[11] explained that, for the most part, men with cancer are more likely to be concerned with the loss of body function rather than the change in appearance. This functional change is mainly in relation to the shift in abilities related to physical labor during treatment. Interestingly, the authors emphasized that the youngest man in this study did express grief about the change in his appearance, leading the authors to discuss the possible relationship between age and body image concerns in the context of cancer.

To further illustrate the possible role of age in the concern with changed body appearance, Hilton et al[15] conducted a secondary analysis of narrative interviews with 37 young men and women with cancer in the United Kingdom, with ages ranging from 18 to 38 years. The secondary analysis examined the comparison of the cancer experience between young adult men and women. This study revealed that alopecia due to cancer treatment forced the participant to confront cancer publicly rather than privately. Men in particular described the feelings of vulnerability that accompany this change. Men with cancer experiencing alopecia talked about losing hair from all body surfaces, resulting in feelings of feminization. Adjustment to this change in body image was difficult for young men with cancer.

Schmidt et al[20] investigated the factors influencing sexual functioning in male and female patients with rectal cancer through a prospective quantitative study in Germany. The data reveal that both men and women with rectal cancer experienced impaired sexual function and enjoyment, but men experienced more severe distress than women did. This distress was more pronounced with younger men and the distress remained over time. Similarly, Brodsky[10] conducted a qualitative study to examine the experience of young men undergoing treatment of nonseminomatous testicular cancer. Eleven men with an average age of 35 years were interviewed in the United States. Brodsky[10] reported that sexual functioning after testicular cancer was more distressing than cosmetic concerns, but hair loss was also associated with negative emotions.

The Good Father or Not?

With the change in masculine identity came changes in emotions for men with cancer. Some of these emotions were associated with the concept of being a ''good'' father. Using a qualitative exploratory design, Helseth and Ulfsaet[14] interviewed 10 families with cancer in Norway, 3 of which included men with cancer who had children. These men described their need to be a good father by providing protection and security for their families.

In another qualitative study, which included 10 fathers, Semple and McCance[24] detailed the experience of striving to be a good father from diagnosis, through treatment, and while living with the consequences of having cancer. Findings revealed that fathers experienced the conflicting feelings between the need to be a good parent while balancing the need to be a good patient in the context of cancer. Helseth and Ulfaseat[14] reported that family members have different needs during the cancer experience, and fathers with cancer work to balance the differing needs of each member of the family. The authors indicated that because of reduced energy or declining health, the illness experience limits the ability of the father with cancer to respond to each identified family need as he would hope.

Within the 16 studies reviewed, there are further examples of the impact that cancer has on men's experience of fatherhood and the emotions associated with being a father. Mesquite et al[18] expressed that a man with cancer experiences new fear in his life, whereas Semple and McCance[24] explained that the parent fears death and leaving his/her children without a parent. In an interpretive qualitative study, Elmberger et al[13] interviewed 8 fathers with cancer in Sweden. These in-depth interviews of fathers with children younger than 18 years provided descriptions of how cancer affects the role of a father. These fathers explained that they experience changing emotions, not only from diagnosis but also the new experience of vacillating emotions, particularly between the feelings of hope and doubt.

For fathers with cancer, focusing on their children helped in coping with their disease. Elmberger et al[13] revealed that being surrounded by family during illness helped to promote a sense of healthy well-being for fathers with cancer. Although young men struggled with their identity when they had to reduce their work hours, changes in work life provided an opportunity for fathers to spend more time with their children, thus becoming closer to their children. The importance of fatherhood is further illustrated by Helseth and Ulfaseat[14] when they described that time with children brought happiness to fathers, by Semple and McCance[24] when they showed that men with cancer appreciate life as a parent, and byHou et al[17] when they described the parents' enjoyment of being comforted by their young children. These responses, illustrating deepening relationships with children during a challenging time, describe the effect that children have on fathers coping with cancer.

Where young men were not fathers, studies discussed concerns over the ability of young men to father biological children after cancer.[10,12,22] Brodsky[10] noted that some young men with cancer considered uncertainties about future fertility to be a tradeoff for future health. However, other authors found that young men with cancer had worries about their future fertility. Chapple et al[12] conducted a qualitative study in the United Kingdom to explore the fertility issues of young men diagnosed with and treated for cancer. Of the 18 men, aged 16 to 26 years at the time of the interviews, some regarded possible infertility to be a chief worry, whereas others considered it to be a potential worry in the future when they are older. In addition, Schover et al[22] conducted a quantitative study in which 201 men, aged 14 to 40 years at diagnosis, were surveyed in the United States to determine their knowledge, attitudes, and experiences regarding cancer-related infertility and sperm banking. The authors found that 41% of the men surveyed wished for a child in the future, and men who did not have children at the time of diagnosis were more likely to want children in the future than were men who already had children. These men were worried about cancer-related infertility, and yet only 60% of men in the study recalled speaking to a health provider about fertility concerns before their treatment began.

Family and That Special Bond

Family has an important function in the lives of men with cancer. It is recognized that the whole family is impacted by cancer.[18,24] The family bonds between men and their children, spouses, or parents are described in the studies under review.

It is possible that younger men are more dependent on their family than older men are in cancer. Seal and Charteris- Black[23] conducted a qualitative study in the United Kingdom of the experience of cancer among 102 participants. The authors revealed that younger men with cancer were more dependent on their families for support, whereas older men drew on their social confidence to problem solve and were less dependent on their families. The increased dependency on family by younger men with cancer has been reported to be difficult for them, causing some to act out with aggression.[10]

At times, family bonds are challenging to maintain during cancer because of the experienced lack of energy during cancer. Even when men with cancer lacked the energy they desired to meet their families' needs, it was clear that family offered a special bond to men with cancer, as indicated by concern and acts of support.[11,17,18] Using a qualitative grounded theory approach, Hou et al[17] interviewed 16 people with colorectal cancer in China; 14 of these were married with children. Ten of the participants were men aged 44 to 68 years, and it should be noted that this study narrowly meets the age requirements of this review. This study found that family was prominent in the supportive needs of men with cancer. As a result, men paid attention to sustaining those familial relationships when attempting to protect the family members by not overburdening them, fearing alienation from their loved ones if they are overburdened. Similarly, Cecil et al[11] found that men with cancer did not want to impose in emotional or practical ways on their family members. Men with cancer wanted to protect their families, just as they might in normal circumstances before their illnesses.

Family bonds were related to family functioning in a study by Schmitt et al.[21] This quantitative study examined factors associated with family functioning among parents with cancer in 8 European countries. Twenty-two fathers with cancer were included in the study, with these men being fathers of minor children. These findings highlighted the role of family members in times of cancer on family functioning. Specifically, the 2-parent family composition was associated with higher levels of family functioning than lone-parent families, and it was the mental health of the mother–notably her depression level–that affected family functioning most, even when the father had the cancer diagnosis. In that way, cancer was not shown to be as strong a predictor of poor family functioning as maternal depression, suggesting that the quality of life of all family members is important to maintaining the special bonds of family when a father has cancer.

Silencing Cancer Talk

For men with cancer, communicating a cancer diagnosis to loved ones is one of the hardest aspects of the cancer experience[16] and elicits a sense of fear.[24] Cancer communication for men with cancer is touched by feelings of guilt, grief, vulnerability,[18] and fear of burdening others.[16] As a result, men with cancer silence themselves about cancer when possible as a means of coping with this distress.

Cancer communication with male peers is a complicated social process in which a man with cancer may feel that his friends do not understand his cancer experience.[11] Hilton et al[16] conducted a secondary analysis of narrative interviews with young adults' experience of disclosing their cancer diagnoses in the United Kingdom. This study included 16 men aged 18 to 34 years. The authors revealed that these young men understood that participating in everyday life meant that some peers would learn about a man's diagnosis, and as a result, men would disclose their cancer in an honest way to preempt uncomfortable situations. Men in this study revealed a gendered approach to disclosure among friends: Men with cancer preferred to discuss their cancer using humor, even at the risk of being the target of the joke, increasing the likelihood of being included in the camaraderie rather than excluded. The authors considered this use of humor to be a gender-appropriate method of disclosing cancer within a peer group.

Men with cancer also struggled with regard to telling their vulnerable family members about cancer as well,[16] including their children.[13,24] Semple and McCance[24] revealed that fathers with cancer experienced fear when considering disclosing cancer information with their children and struggled with their role as protector of their children in the context of cancer communication. Fathers with cancer were guided by their desire for open and honest communication with their children to avoid mistrust[24] and to encourage feelings of security that can come with knowledge.[14] Fathers with cancer struggled with what children needed to know and why[24] as they considered their children's developmental stages.[14]

Semple and McCance[24] found that fathers with cancer used silence as a strategy to cope with the challenges related to cancer communication and to protect their children from the emotional effects of cancer. Parents in this study identified the need for more support regarding cancer communication with their children.

Living With Uncertainty

Young men with cancer identified the difficulty involved in living with the uncertainty created by a cancer diagnosis and the need to cope with this uncertainty.[13,14,24,25] Men considered the possibility of a recurrence[10,17,24] and the implications of a second diagnosis on their futures, including their roles in their families.[11,13,24] Other uncertainties involved changes in finances,[11] self-image,[13,18] sexual function,[10,20,24] fertility,[12,22] and future roles in family.[11,13,24] Other studies addressed how men cope with cancer and what helped men in their coping with living with uncertainty.

Zucca et al[25] conducted a cross-sectional quantitative study in Australia in which long-term survivors assessed their use of coping strategies. Twenty-seven percent of the participants in the study were men aged 18 to 49 years. It was revealed that cancer survivors living with 2 or more children had few odds of fatalistic coping compared with those living with no children. Several studies discussed what helps men with cancer cope with uncertainty, including reestablishing normality, reprioritizing life, and focusing on family. Routines provide a sense of normality for men with cancer,[13,24] which can provide feelings of security.[14] Semple and McCance[24] explain that returning to work after cancer was associated with moving beyond the cancer experience and was pivotal in regaining a sense of normality for men. Elmberger et al[13] explain that routines keep family life going and provide a positive sense of well-being for fathers with cancer. However, details concerning the cultural expectations that surround returning to work after illness were revealed by Parsons et al[19] and provide another point of view. The authors designed a qualitative study in which 8 male and 6 female osteosarcoma survivors aged 18 to 35 years were interviewed. Narrative data analysis showed that these participants engaged in 3 types of interconnected work because of cancer, including illness work, identity work, and vocational work. Here, returning to vocational work after cancer was described as a complicated process because the participants experienced a change in their relationship to work after engaging in the illness work and identity work required in this experience. The authors challenge cultural expectations of what constitutes success in returning to routines, in this case returning to work, and highlight the complex physical and psychosocial processes involved in returning to work after cancer.

Remaining positive about life situations is an emotionfocused coping strategy that men with cancer may use to reframe their cancer experience.[17] Some men remained positive by reprioritizing their work and family after cancer[24] or to appraise what they considered valuable in their lives as fathers.[13] These efforts to reframe the negative aspects of cancer into positive future experience helped men cope with changes in their identity brought on by their cancer.[13,17]

These ways of coping reveal the struggle to gain control of the cancer experience for men with cancer.[13,17,18] Desiring to gain control is present in several studies of men with cancer. Hou et al[17] describe that men with cancer strive for mastery, to gain control where there are feelings of a loss of control. In addition, Mesquita et al[18] explain that men who have experienced a shift in their masculine identity due to cancer may work to regain a sense of order through reconstructing their masculine identities despite the challenges of cancer in their lives. Finally, Elmberger et al[13] revealed that fathers used strategic methods to regain control at times by gathering information, planning treatment, viewing cancer as a step-by-step process, as well as framing their cancer as a time-limited experience. Fathers with cancer develop ways of coping with the distress involved in living with uncertainty due to cancer.

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