Ulrike Boehmer, PhD

Prostate cancer (the most common cancer in men) has a considerable impact on the quality of patients’ lives. After a frightening diagnosis, the treatments cause a variety of unpleasant side effects. In the case of metastatic disease, hormonal treatment through either orchiectomy or a permanent regimen of medications to suppress testosterone causes nausea, hot flashes, loss of muscle tone, and erectile dysfunction.¹ The complex psychosocial effects of diagnosis and treatment, such as changes in body and self-image, masculinity, sexuality, and uncertainty, are gradually recognized.² However, most investigations of quality of life have focused on the patients, increasing our understanding of how men respond to prostate cancer, but telling us little about how this disease affects the shared lives of men and their significant others. Prostate cancer threatens men’s survival and families’ futures. Sexual dysfunction following treatment has implications for both men and their intimate partners. Therefore, we explored the perceptions of men who have been treated for prostate cancer, and those of their wives, regarding the changes that were caused by prostate cancer and its treatment.

The effect of illness on marital quality is largely an unresolved area.³ Some researchers argue that there is no change—or if there is a change, it is a positive association between illness and the spousal relationship, because it brings spouses closer together.⁴ Others point to negative impacts on the marital relationship.⁵ It has been suggested that a worsening of marital quality can be explained by the financial implications of illness, the problematic behavior of the sick person, and the changed division of labor in the couple, including the loss of shared activities.⁵ A decline in marital quality is often perceived by spouses who suffer from increased stress and depression because of their spouses’ disease.^5,6 Research on couples coping with illness has highlighted the importance of open communication for positive adjustment by patients and their spouses.^7,8 But couples’ ability to communicate varies,⁸ and many avoid truthful and open communication with each other⁹ and with other friends and family members.¹⁰

Only a few prostate cancer studies have considered the patient’s social context. Studies that include spouses point to the interrelationship of their reactions to prostate cancer.^3,11-17 We focussed on couples’ communication about prostate cancer and its treatment effects.

Methods

Our study is part of a larger investigation of the psychosocial effects of metastatic prostate cancer, that had the development of quality-of-life scales as its goal.² We recruited a convenience sample of men who had undergone treatment and some of their wives. After we obtained informed consent, 15 focus groups were conducted with patients and 2 were conducted with the wives. The wives participated in focus groups immediately after their husbands, which minimized the opportunities for them to discuss the content of their respective focus groups. A medical sociologist and a urologist (both men) conducted the sessions, which were videotaped and transcribed for analysis.

We examined what the 20 married participants said about their experiences with prostate cancer. The husbands had an average age of 69 years; 11 were white, 9 were African American; 13 had undergone orchiectomy, and 7 were receiving monthly injections to suppress testosterone. Of the 7 wives, 5 were white and 2 African American.

We analyzed these data according to grounded theory methods of qualitative analysis.¹⁸ Thus, we developed codes to interpret the content of focus group participants’ accounts and then inductively developed summary themes characterizing their expressed experiences of prostate cancer. This method involves constant comparison of analytic codes. Within the set of 20 husbands, we compared how they described their communication with their wives in the context of discussions with other men. Then we compared within the set of 7 husband-wife pairs how each party described their communication with their spouse. The first author analyzed all data, and the second author independently analyzed a random selection of the data for validation. Disagreements in interpretation were resolved by continued comparative usage of the data, revising the codes and themes.

Results

The focus groups used an open-ended unstructured protocol. However, all discussions included questions about the perception of changes, including physical changes, sexuality, oneself or one’s spouse.

Physical Changes

Both husbands and wives readily answered questions about the occurrence of physical changes after prostate cancer treatment. Most men were forthcoming with descriptions of physical changes such as fatigue, hair loss, hot flashes, and weight gain. In their focus groups wives confirmed their husbands’ experience of these changes. Wives learned about these complications in 2 ways. Most men told their wives about their changed physical conditions. Some men, however, were silent about their physical well-being. In these cases, wives relied on nonverbal communication and close observation of their husbands. One man said, “I’ve slowed quite a bit. My wife, she worries about me more than I do myself. She watches every move I make when I’m around there. I don’t know why, but she keeps her eyes on me.”

Coping with Physical Changes

There was variation in couples’ communication. It ranged from sharing information to dealing with feelings in complete isolation. Two men whose wives were not interviewed had not told their wives they have prostate cancer. They reasoned that their wives would not be able to handle the information because they would associate cancer with death. In the Table 1 we present responses from one couple that express how both spouses noticed and had feelings about physical changes but avoided talking with each other about them.

Wives’ perspectives on couple communication were that verbal exchanges about feelings do not generally occur, but the reasons for this vary. Wives admit to not asking based on a fear they might stir things up in their husbands or create problems that were nonexistent for their husbands. Other wives expected their husbands to hide feelings, thereby admitting that their mental well-being is interrelated. For example, one wife said, “I don’t know if he worries about his death because if he would get down, I would get down. So he hides it very well.” Others stated that men refuse to talk about their feelings even when they are asked about their well-being. Despite this emphasis that the men were the ones who were not communicating, other women revealed that they were participants, by hiding their emotions or avoiding questions to protect their husbands.

The men’s statements indicated that they had a hard time adjusting to their physical changes and that they were not comfortable disclosing their feelings about these changes. They expressed feelings of embarrassment and shame about their physical changes. Also, the men stated their fears and how they withhold them from their wives. One man said:

The main thing is that you worry. A normal pain that you normally wouldn’t pay any attention to before, now you say, well maybe the cancer has spread to there…. My wife worries about that if I have a little ache or pain. I don’t normally tell her, because if I do, she goes crazy. So you have to be very careful with your wife, too.

Men generally pull themselves together. Reasons for the men’s reticence in showing emotions were either that they were protecting others, such as their wife and children, or that it was self-protection from the reactions of their wives.

The wives were more verbal about the despair they felt. Most of the men downplayed the implications of the cancer diagnosis or cancer treatment on their lives. They made statements such as “nothing has changed” and “life goes on as before.” This might partially explain the couples’ lack of communication about feelings and fears about cancer and how it alters men’s lives. Couples in general, but particularly the men, wanted to get their lives back together and move beyond prostate cancer. This desire may be so strong that it undercut the couples’ communication about fears and other feelings. One outcome of avoiding conversations is uncertainty about each other’s feelings or thoughts. This became most apparent when one of the wives questioned the interviewer about what their husbands shared in their interviews, wanting the interviewer to indicate what is burdensome to their husbands. She reasoned that knowing this would help them to support their husbands better.

Although not communicating openly, many of the couples used jokes and teasing to make each other comfortable. At the core of the jokes were important emotions, such as fears, that they seemed not to dare voice otherwise. Although the jokes transmitted some feelings or fears, they did not facilitate couple communication. The wives told jokes to build up their husbands’ morale, while the men used jokes to couch their fears. For example, one man indirectly revealed his fear of dying. His wife stated, “He is always asking me to lose weight, and he’ll say, ‘Now [wife’s name] you’re going to have a hard time getting another husband, if you keep putting that weight on.’”

The men’s communication with people other than their wives was even more restricted. Not all men feel comfortable enough to reveal their diagnosis to family and friends. Some of the men relied on their wives to inform others about the diagnosis, and the men who told others reported talking predominantly to other men. If they had children they talked to their sons, while not necessarily telling their daughters. If the men had conversations with others, the information was limited to stating the diagnosis and the outcome of check-ups. No man reported ever turning to other men to deal with feelings or fears about cancer, even though they assumed that some of their friends might have it as well. At best, men received factual information from other men but never emotional support or information about others’ experiences and adjustment to the disease. The wives’ communication network was larger and the quality of their support network different. Generally wives reported that others, such as daughters, relatives, church members, and neighbors who were friends, were available to them for support.

Perceptions of Changes in Spouse

Despite the complicated communication patterns, including an avoidance to disclose feelings about the effects of protate cancer, most couples denied that cancer caused other changes in their mates or in their marital relationship. Most of the couples denied that cancer caused other than physical changes in their mates or their marital relationship. The men generally said that their wives treated them just the same. Most of the wives confirmed this, stating that they have not increased their attention. However, the accounts by the husbands and the wives make references to changes that did occur. One man told the interviewer that his wife finds him difficult to get along with since his cancer treatment. Another man admitted being frequently irritable and having angry outbursts. Another change that was reported involved the men’s altered social network. Some wives talked about a decrease in their husbands’ interactions with friends. Some husbands confirmed that they underwent certain social changes. One husband stated that they socialize more as a couple, since he believes it to be important to his wife.

A few wives reported changes, such as their husbands’ jealousy. The women said that there was no reason for their husbands to be jealous since their commitments to their husbands remained unchanged. Jealousy was also brought up in the men’s focus groups. Both husbands and wives told the interviewer about the breakups of other marriages. The women referred to wives who left their husbands because they had prostate cancer, and the men reported that other men left their wives because they feared their wives were betraying them. One man explained:

I don’t try to worry about it, because really if you go to worrying about it, a person doing something, you can’t do it and with the going out or something like that, but I will just let her go, you know, if I’m going to sit there and worry, cause I’m not going to try to hurt myself. Now I’m concerned where she goes, but I won’t think of that…. I don’t want it on my mind. If it ever got on my mind, she may as well be doing it, see what I mean. I don’t even think about it.

Although it was a small minority that voiced worries and fears about betrayal and jealousy, it was an indication that this emergence of insecurity might have been triggered by the most radical change in couples’ lives: their changed sexuality.

Sexuality

In the interviews, husbands and wives described the implications of prostate cancer on their sex lives. With regard to communication in couples, however, most communication about sexuality took place when men were presented with treatment options that had impotence as a side effect. Husbands and wives described how they discussed the threat of giving up their sex lives. One man said, “we had quite a few discussions…. We just cried a little bit and that was it.” The same man revealed that his decision to choose hormone shots over surgery was also influenced by the belief that if he were to stop taking the hormones his sexual functioning would return, and surgery was permanent. Another man disclosed that after surgery he was depressed for months because he lost his ability to have sexual relations.

Several women let their husbands know that when faced with a choice between prolonging his life and having sexual relations, they would opt for his prolonged life expectancy. One woman stated, “I would rather have him than sex until I am 100.” Some men described having been motivated by the same tradeoff. The men’s descriptions, however, are dominated by references to the difficulty of consenting to a treatment that deprived them of their sexuality. One man explained its importance by stating, “I wouldn’t care if I had to walk around straddle-legged or not if I could have sex. This testicle removal hurt the desire for my sex life. It took it, and it dissolved my self away.”

After the decision about treatment, however, when the treatments take their toll on men’s sexual functioning, most couples’ communication about their sex life discontinues. But the men were outspoken with the interviewer in their descriptions of impotence. They stated their inability to achieve an erection, their loss of a sexual urge, and that lack of sexual functioning threatened their masculinity. Also, the men’s accounts indicated that their definition of sexuality is intercourse. The men’s inability to achieve an erection caused them to restrain from any type of sexual interactions. Generally, the men described their wives as understanding and accommodating to their loss of sexual functioning. One man told the interviewer that his wife made sexual advances that he could not reciprocate. Many men held the belief that the loss of sexuality had little or no effect on their wives. They portrayed their wives as adapting well to the loss of sexuality, because in men’s opinions women know how to cope with this change. Religiosity was one coping style of wives that men mentioned to the interviewer, “My wife goes to church a lot. She found the Lord, I guess. It don’t bother her much. She don’t act like it does.”

Men’s accounts reveal that there is little knowledge about their wives’ feelings about the sexual loss. Men’s assessment that sexual loss means little to their wives was based on reasoning that it must mean little to them since they are not complaining. As one man put it: “As far as I know [it does not bother her]… Now if she had said something…but if it is, she hasn’t said anything. It could be bothering her, but she hasn’t said anything.”

The importance of sexuality was mostly proclaimed in focus groups with men. Some men confided in the interview situation that their sexuality was diminished before prostate cancer. With increasing age, sex became less frequent. Others admitted to problems with impotence before prostate cancer. One man stated that being with his wife has always been more important than sexual activity. The men’s coping with a lack of sexuality after prostate cancer included avoidance (by putting it out of their minds), as well as through resignation by accepting that sexuality belongs to their past. These coping styles preclude seeking conversations with their wives.

Overwhelmingly, wives are focused on the importance of sexuality for their husbands without ever indicating the importance they give to sexuality. Wives’ reports center on ways of accommodating to the lack of sexual relations. One wife said:

It doesn’t bother me. I just made up my mind that it can’t be, so I just keep it off of my mind. I do other things to keep it off of my mind. I just try to stay active doing other things. It hadn’t bothered me. It used to, it would bother me to hug and kiss him, but now it doesn’t since it is no longer that way. It can’t be. I just made up my mind. Consistently, wives stated how devastating the loss of sex is for their husbands, paying little attention to their own needs. One wife wished her husband could have an erection, because she believed it was crucial for his masculinity. Wives accommodated the lack of sex and made it known that they would never seek sex outside of marriage. Instead, they did everything they could to build up their husband’s self-esteem by reassuring him that his masculinity was not tied to sexual performance. Wives confirmed that there is no sexual activity of any form; one wife even stated that her husband is less caring or romantic since his sexual dysfunction. Another wife reacted surprised to the interviewer raising the possibility of sexual activity. The avoidance of communication about sexuality leaves spouses on their own when adjusting to sexual loss.

Discussion

The focus group interviews with men and some of their wives provided us with insight into couples’ experiences with prostate cancer. Their perspectives contribute toward understanding the implications of prostate cancer on the marital relationship. Our analysis is greatly influenced by the suggestion of previous studies that open communication among spouses is important for a positive adjustment by patients and their spouses.^7,8 We find that most of the men are capable of communicating the factual physical changes, while they appear unwilling, or perhaps unable, to communicate with their wives about their feelings regarding these changes.

Limitations

The inclusion of spouses in studies that focus on the well-being of men with prostate cancer is imperative. However, we are aware of the limitations of the wives’ focus group data. In addition to the small number, our study’s focus restricted the interviews with wives mostly to their assessment of their husbands’ well-being. The women had little opportunity to discuss their subjective experiences. Also, the focus groups with wives were conducted by 2 men. One can speculate that discussions of sensitive matters such as sexuality may be constrained when the interviewers are of the opposite sex. The same-sex environment of the men’s focus groups, however, may have elicited frank and honest accounts. Our limited sample prevents us from exploring specific cultural differences in couples of different racial or ethnic background. The conclusions we reached were affected by the preliminary nature of our study. In particular, we have no information about the couples’ marital relationship and communication styles before the diagnosis of prostate cancer. Other research indicates that couples’ communication patterns after a diagnosis are similar to the style they had before the diagnosis.⁸ Also, our study’s findings may be affected by the stage of disease. Future prospective studies that measure psychological well-being of patients with prostate cancer and their partners need to consider the important issues raised by our study. In particular, the apparent contradiction of not communicating about fears and death while claiming marital satisfaction warrants further research. Larger studies will have to demonstrate the benefits of disclosure of feelings on adjustment before care providers are asked to contribute to open communication between spouses. Nevertheless, the findings of our research indicate that the inclusion of spouses in research expands our understanding of the effects of prostate cancer on well-being.

Lack of Communication

The data give no indication that men deal with cancer by discussing fears of death and dependency with their wives. Instead they express a desire to put the cancer behind them, “to be done with the disease.” The men presented themselves as having adjusted to the disease with a self-identity that is unchanged by prostate cancer. Their lack of communication about emotions received little challenge from their wives. Moreover, the wives collaborated in that they hid their own fears and despair instead of pursuing spousal communication about emotions. Thus, protective buffering is the prevalent coping style by both spouses, confirming the findings of earlier research that spouses’ coping styles and emotions are interrelated.^7,19,20

This is problematic for 2 reasons. Earlier research indicates that there is an inverse relationship between protective buffering and marital satisfaction, as well as a strong positive association between protective buffering and patient and spouse distress.⁷ The couples with metastatic prostate cancer claim that there is little change in their mates. They overwhelmingly portray themselves as happy and content with their marital relationship. Contrary to this depiction, references to moodiness and the emergence of jealousy point to strains on the marital relationship. Also, lack of communication leads to uncertainty about their spouse’s feelings and thoughts, another potential strain on the marital relationship. Although our study does not entail an assessment of men’s and wives individual or joint adjustment to prostate cancer, we certainly find evidence of the risk factors for poor adjustment which previous studies indicate: lack of communicating and protective buffering. Also, losing or abandoning one’s sex life, as in our sample, is a significant change that most likely has a strong association with psychological well-being, as found in earlier studies.²¹ This appears to suggest that the couples with metastatic prostate cancer may be at risk for distress and poor adjustment.

Conclusions

These insights into couples’ coping styles are of special relevance to physicians who care for men with prostate cancer. Generally, physicians are open to married men involving their wives in the management of prostate cancer. However, our findings raise questions about how involved wives really are. Although women are interested in their husbands’ prostate cancer, the lack of communication within the couple suggests that their active involvement may be less than is commonly assumed. Care providers may positively influence patients’ adaptation and quality of life by facilitating involvement by the patient’s wife, rather than assume that her presence alone signals active involvement. Also, physicians can suspect that patients who choose to go through treatment by themselves may be at risk for poor adjustment to their diagnosis.

Related Resources

• National Prostate Cancer Coalition http://www.4npcc.org/Advocates.htm/
• US TOO, International http://www.ustoo.com/
• Online Decision Support for Prostate Cancer http://www.cancerfacts.com/

· Acknowledgments ·

Support for our research was provided by US Army Medical Research and Materiel Command, Fort Detrick, Maryland, grant number DAMD17-99-1-9052, Principle Investigator, Dr Boehmer. The data collection was supported by the Department of Veterans Affairs Health Services Research and Development Service grant SDR-93-007.

Prostate cancer (the most common cancer in men) has a considerable impact on the quality of patients’ lives. After a frightening diagnosis, the treatments cause a variety of unpleasant side effects. In the case of metastatic disease, hormonal treatment through either orchiectomy or a permanent regimen of medications to suppress testosterone causes nausea, hot flashes, loss of muscle tone, and erectile dysfunction.¹ The complex psychosocial effects of diagnosis and treatment, such as changes in body and self-image, masculinity, sexuality, and uncertainty, are gradually recognized.² However, most investigations of quality of life have focused on the patients, increasing our understanding of how men respond to prostate cancer, but telling us little about how this disease affects the shared lives of men and their significant others. Prostate cancer threatens men’s survival and families’ futures. Sexual dysfunction following treatment has implications for both men and their intimate partners. Therefore, we explored the perceptions of men who have been treated for prostate cancer, and those of their wives, regarding the changes that were caused by prostate cancer and its treatment.

The effect of illness on marital quality is largely an unresolved area.³ Some researchers argue that there is no change—or if there is a change, it is a positive association between illness and the spousal relationship, because it brings spouses closer together.⁴ Others point to negative impacts on the marital relationship.⁵ It has been suggested that a worsening of marital quality can be explained by the financial implications of illness, the problematic behavior of the sick person, and the changed division of labor in the couple, including the loss of shared activities.⁵ A decline in marital quality is often perceived by spouses who suffer from increased stress and depression because of their spouses’ disease.^5,6 Research on couples coping with illness has highlighted the importance of open communication for positive adjustment by patients and their spouses.^7,8 But couples’ ability to communicate varies,⁸ and many avoid truthful and open communication with each other⁹ and with other friends and family members.¹⁰

Only a few prostate cancer studies have considered the patient’s social context. Studies that include spouses point to the interrelationship of their reactions to prostate cancer.^3,11-17 We focussed on couples’ communication about prostate cancer and its treatment effects.

Methods

Our study is part of a larger investigation of the psychosocial effects of metastatic prostate cancer, that had the development of quality-of-life scales as its goal.² We recruited a convenience sample of men who had undergone treatment and some of their wives. After we obtained informed consent, 15 focus groups were conducted with patients and 2 were conducted with the wives. The wives participated in focus groups immediately after their husbands, which minimized the opportunities for them to discuss the content of their respective focus groups. A medical sociologist and a urologist (both men) conducted the sessions, which were videotaped and transcribed for analysis.

We examined what the 20 married participants said about their experiences with prostate cancer. The husbands had an average age of 69 years; 11 were white, 9 were African American; 13 had undergone orchiectomy, and 7 were receiving monthly injections to suppress testosterone. Of the 7 wives, 5 were white and 2 African American.

We analyzed these data according to grounded theory methods of qualitative analysis.¹⁸ Thus, we developed codes to interpret the content of focus group participants’ accounts and then inductively developed summary themes characterizing their expressed experiences of prostate cancer. This method involves constant comparison of analytic codes. Within the set of 20 husbands, we compared how they described their communication with their wives in the context of discussions with other men. Then we compared within the set of 7 husband-wife pairs how each party described their communication with their spouse. The first author analyzed all data, and the second author independently analyzed a random selection of the data for validation. Disagreements in interpretation were resolved by continued comparative usage of the data, revising the codes and themes.

Results

The focus groups used an open-ended unstructured protocol. However, all discussions included questions about the perception of changes, including physical changes, sexuality, oneself or one’s spouse.

Physical Changes

Both husbands and wives readily answered questions about the occurrence of physical changes after prostate cancer treatment. Most men were forthcoming with descriptions of physical changes such as fatigue, hair loss, hot flashes, and weight gain. In their focus groups wives confirmed their husbands’ experience of these changes. Wives learned about these complications in 2 ways. Most men told their wives about their changed physical conditions. Some men, however, were silent about their physical well-being. In these cases, wives relied on nonverbal communication and close observation of their husbands. One man said, “I’ve slowed quite a bit. My wife, she worries about me more than I do myself. She watches every move I make when I’m around there. I don’t know why, but she keeps her eyes on me.”

Coping with Physical Changes

There was variation in couples’ communication. It ranged from sharing information to dealing with feelings in complete isolation. Two men whose wives were not interviewed had not told their wives they have prostate cancer. They reasoned that their wives would not be able to handle the information because they would associate cancer with death. In the Table 1 we present responses from one couple that express how both spouses noticed and had feelings about physical changes but avoided talking with each other about them.

Wives’ perspectives on couple communication were that verbal exchanges about feelings do not generally occur, but the reasons for this vary. Wives admit to not asking based on a fear they might stir things up in their husbands or create problems that were nonexistent for their husbands. Other wives expected their husbands to hide feelings, thereby admitting that their mental well-being is interrelated. For example, one wife said, “I don’t know if he worries about his death because if he would get down, I would get down. So he hides it very well.” Others stated that men refuse to talk about their feelings even when they are asked about their well-being. Despite this emphasis that the men were the ones who were not communicating, other women revealed that they were participants, by hiding their emotions or avoiding questions to protect their husbands.

The men’s statements indicated that they had a hard time adjusting to their physical changes and that they were not comfortable disclosing their feelings about these changes. They expressed feelings of embarrassment and shame about their physical changes. Also, the men stated their fears and how they withhold them from their wives. One man said:

The main thing is that you worry. A normal pain that you normally wouldn’t pay any attention to before, now you say, well maybe the cancer has spread to there…. My wife worries about that if I have a little ache or pain. I don’t normally tell her, because if I do, she goes crazy. So you have to be very careful with your wife, too.

Men generally pull themselves together. Reasons for the men’s reticence in showing emotions were either that they were protecting others, such as their wife and children, or that it was self-protection from the reactions of their wives.

The wives were more verbal about the despair they felt. Most of the men downplayed the implications of the cancer diagnosis or cancer treatment on their lives. They made statements such as “nothing has changed” and “life goes on as before.” This might partially explain the couples’ lack of communication about feelings and fears about cancer and how it alters men’s lives. Couples in general, but particularly the men, wanted to get their lives back together and move beyond prostate cancer. This desire may be so strong that it undercut the couples’ communication about fears and other feelings. One outcome of avoiding conversations is uncertainty about each other’s feelings or thoughts. This became most apparent when one of the wives questioned the interviewer about what their husbands shared in their interviews, wanting the interviewer to indicate what is burdensome to their husbands. She reasoned that knowing this would help them to support their husbands better.

Although not communicating openly, many of the couples used jokes and teasing to make each other comfortable. At the core of the jokes were important emotions, such as fears, that they seemed not to dare voice otherwise. Although the jokes transmitted some feelings or fears, they did not facilitate couple communication. The wives told jokes to build up their husbands’ morale, while the men used jokes to couch their fears. For example, one man indirectly revealed his fear of dying. His wife stated, “He is always asking me to lose weight, and he’ll say, ‘Now [wife’s name] you’re going to have a hard time getting another husband, if you keep putting that weight on.’”

The men’s communication with people other than their wives was even more restricted. Not all men feel comfortable enough to reveal their diagnosis to family and friends. Some of the men relied on their wives to inform others about the diagnosis, and the men who told others reported talking predominantly to other men. If they had children they talked to their sons, while not necessarily telling their daughters. If the men had conversations with others, the information was limited to stating the diagnosis and the outcome of check-ups. No man reported ever turning to other men to deal with feelings or fears about cancer, even though they assumed that some of their friends might have it as well. At best, men received factual information from other men but never emotional support or information about others’ experiences and adjustment to the disease. The wives’ communication network was larger and the quality of their support network different. Generally wives reported that others, such as daughters, relatives, church members, and neighbors who were friends, were available to them for support.

Perceptions of Changes in Spouse

Despite the complicated communication patterns, including an avoidance to disclose feelings about the effects of protate cancer, most couples denied that cancer caused other changes in their mates or in their marital relationship. Most of the couples denied that cancer caused other than physical changes in their mates or their marital relationship. The men generally said that their wives treated them just the same. Most of the wives confirmed this, stating that they have not increased their attention. However, the accounts by the husbands and the wives make references to changes that did occur. One man told the interviewer that his wife finds him difficult to get along with since his cancer treatment. Another man admitted being frequently irritable and having angry outbursts. Another change that was reported involved the men’s altered social network. Some wives talked about a decrease in their husbands’ interactions with friends. Some husbands confirmed that they underwent certain social changes. One husband stated that they socialize more as a couple, since he believes it to be important to his wife.

A few wives reported changes, such as their husbands’ jealousy. The women said that there was no reason for their husbands to be jealous since their commitments to their husbands remained unchanged. Jealousy was also brought up in the men’s focus groups. Both husbands and wives told the interviewer about the breakups of other marriages. The women referred to wives who left their husbands because they had prostate cancer, and the men reported that other men left their wives because they feared their wives were betraying them. One man explained:

I don’t try to worry about it, because really if you go to worrying about it, a person doing something, you can’t do it and with the going out or something like that, but I will just let her go, you know, if I’m going to sit there and worry, cause I’m not going to try to hurt myself. Now I’m concerned where she goes, but I won’t think of that…. I don’t want it on my mind. If it ever got on my mind, she may as well be doing it, see what I mean. I don’t even think about it.

Although it was a small minority that voiced worries and fears about betrayal and jealousy, it was an indication that this emergence of insecurity might have been triggered by the most radical change in couples’ lives: their changed sexuality.

Sexuality

In the interviews, husbands and wives described the implications of prostate cancer on their sex lives. With regard to communication in couples, however, most communication about sexuality took place when men were presented with treatment options that had impotence as a side effect. Husbands and wives described how they discussed the threat of giving up their sex lives. One man said, “we had quite a few discussions…. We just cried a little bit and that was it.” The same man revealed that his decision to choose hormone shots over surgery was also influenced by the belief that if he were to stop taking the hormones his sexual functioning would return, and surgery was permanent. Another man disclosed that after surgery he was depressed for months because he lost his ability to have sexual relations.

Several women let their husbands know that when faced with a choice between prolonging his life and having sexual relations, they would opt for his prolonged life expectancy. One woman stated, “I would rather have him than sex until I am 100.” Some men described having been motivated by the same tradeoff. The men’s descriptions, however, are dominated by references to the difficulty of consenting to a treatment that deprived them of their sexuality. One man explained its importance by stating, “I wouldn’t care if I had to walk around straddle-legged or not if I could have sex. This testicle removal hurt the desire for my sex life. It took it, and it dissolved my self away.”

After the decision about treatment, however, when the treatments take their toll on men’s sexual functioning, most couples’ communication about their sex life discontinues. But the men were outspoken with the interviewer in their descriptions of impotence. They stated their inability to achieve an erection, their loss of a sexual urge, and that lack of sexual functioning threatened their masculinity. Also, the men’s accounts indicated that their definition of sexuality is intercourse. The men’s inability to achieve an erection caused them to restrain from any type of sexual interactions. Generally, the men described their wives as understanding and accommodating to their loss of sexual functioning. One man told the interviewer that his wife made sexual advances that he could not reciprocate. Many men held the belief that the loss of sexuality had little or no effect on their wives. They portrayed their wives as adapting well to the loss of sexuality, because in men’s opinions women know how to cope with this change. Religiosity was one coping style of wives that men mentioned to the interviewer, “My wife goes to church a lot. She found the Lord, I guess. It don’t bother her much. She don’t act like it does.”

Men’s accounts reveal that there is little knowledge about their wives’ feelings about the sexual loss. Men’s assessment that sexual loss means little to their wives was based on reasoning that it must mean little to them since they are not complaining. As one man put it: “As far as I know [it does not bother her]… Now if she had said something…but if it is, she hasn’t said anything. It could be bothering her, but she hasn’t said anything.”

The importance of sexuality was mostly proclaimed in focus groups with men. Some men confided in the interview situation that their sexuality was diminished before prostate cancer. With increasing age, sex became less frequent. Others admitted to problems with impotence before prostate cancer. One man stated that being with his wife has always been more important than sexual activity. The men’s coping with a lack of sexuality after prostate cancer included avoidance (by putting it out of their minds), as well as through resignation by accepting that sexuality belongs to their past. These coping styles preclude seeking conversations with their wives.

Overwhelmingly, wives are focused on the importance of sexuality for their husbands without ever indicating the importance they give to sexuality. Wives’ reports center on ways of accommodating to the lack of sexual relations. One wife said:

It doesn’t bother me. I just made up my mind that it can’t be, so I just keep it off of my mind. I do other things to keep it off of my mind. I just try to stay active doing other things. It hadn’t bothered me. It used to, it would bother me to hug and kiss him, but now it doesn’t since it is no longer that way. It can’t be. I just made up my mind. Consistently, wives stated how devastating the loss of sex is for their husbands, paying little attention to their own needs. One wife wished her husband could have an erection, because she believed it was crucial for his masculinity. Wives accommodated the lack of sex and made it known that they would never seek sex outside of marriage. Instead, they did everything they could to build up their husband’s self-esteem by reassuring him that his masculinity was not tied to sexual performance. Wives confirmed that there is no sexual activity of any form; one wife even stated that her husband is less caring or romantic since his sexual dysfunction. Another wife reacted surprised to the interviewer raising the possibility of sexual activity. The avoidance of communication about sexuality leaves spouses on their own when adjusting to sexual loss.

Discussion

The focus group interviews with men and some of their wives provided us with insight into couples’ experiences with prostate cancer. Their perspectives contribute toward understanding the implications of prostate cancer on the marital relationship. Our analysis is greatly influenced by the suggestion of previous studies that open communication among spouses is important for a positive adjustment by patients and their spouses.^7,8 We find that most of the men are capable of communicating the factual physical changes, while they appear unwilling, or perhaps unable, to communicate with their wives about their feelings regarding these changes.

Limitations

The inclusion of spouses in studies that focus on the well-being of men with prostate cancer is imperative. However, we are aware of the limitations of the wives’ focus group data. In addition to the small number, our study’s focus restricted the interviews with wives mostly to their assessment of their husbands’ well-being. The women had little opportunity to discuss their subjective experiences. Also, the focus groups with wives were conducted by 2 men. One can speculate that discussions of sensitive matters such as sexuality may be constrained when the interviewers are of the opposite sex. The same-sex environment of the men’s focus groups, however, may have elicited frank and honest accounts. Our limited sample prevents us from exploring specific cultural differences in couples of different racial or ethnic background. The conclusions we reached were affected by the preliminary nature of our study. In particular, we have no information about the couples’ marital relationship and communication styles before the diagnosis of prostate cancer. Other research indicates that couples’ communication patterns after a diagnosis are similar to the style they had before the diagnosis.⁸ Also, our study’s findings may be affected by the stage of disease. Future prospective studies that measure psychological well-being of patients with prostate cancer and their partners need to consider the important issues raised by our study. In particular, the apparent contradiction of not communicating about fears and death while claiming marital satisfaction warrants further research. Larger studies will have to demonstrate the benefits of disclosure of feelings on adjustment before care providers are asked to contribute to open communication between spouses. Nevertheless, the findings of our research indicate that the inclusion of spouses in research expands our understanding of the effects of prostate cancer on well-being.

Lack of Communication

The data give no indication that men deal with cancer by discussing fears of death and dependency with their wives. Instead they express a desire to put the cancer behind them, “to be done with the disease.” The men presented themselves as having adjusted to the disease with a self-identity that is unchanged by prostate cancer. Their lack of communication about emotions received little challenge from their wives. Moreover, the wives collaborated in that they hid their own fears and despair instead of pursuing spousal communication about emotions. Thus, protective buffering is the prevalent coping style by both spouses, confirming the findings of earlier research that spouses’ coping styles and emotions are interrelated.^7,19,20

This is problematic for 2 reasons. Earlier research indicates that there is an inverse relationship between protective buffering and marital satisfaction, as well as a strong positive association between protective buffering and patient and spouse distress.⁷ The couples with metastatic prostate cancer claim that there is little change in their mates. They overwhelmingly portray themselves as happy and content with their marital relationship. Contrary to this depiction, references to moodiness and the emergence of jealousy point to strains on the marital relationship. Also, lack of communication leads to uncertainty about their spouse’s feelings and thoughts, another potential strain on the marital relationship. Although our study does not entail an assessment of men’s and wives individual or joint adjustment to prostate cancer, we certainly find evidence of the risk factors for poor adjustment which previous studies indicate: lack of communicating and protective buffering. Also, losing or abandoning one’s sex life, as in our sample, is a significant change that most likely has a strong association with psychological well-being, as found in earlier studies.²¹ This appears to suggest that the couples with metastatic prostate cancer may be at risk for distress and poor adjustment.

Conclusions

These insights into couples’ coping styles are of special relevance to physicians who care for men with prostate cancer. Generally, physicians are open to married men involving their wives in the management of prostate cancer. However, our findings raise questions about how involved wives really are. Although women are interested in their husbands’ prostate cancer, the lack of communication within the couple suggests that their active involvement may be less than is commonly assumed. Care providers may positively influence patients’ adaptation and quality of life by facilitating involvement by the patient’s wife, rather than assume that her presence alone signals active involvement. Also, physicians can suspect that patients who choose to go through treatment by themselves may be at risk for poor adjustment to their diagnosis.

Related Resources

• National Prostate Cancer Coalition http://www.4npcc.org/Advocates.htm/
• US TOO, International http://www.ustoo.com/
• Online Decision Support for Prostate Cancer http://www.cancerfacts.com/

· Acknowledgments ·

Support for our research was provided by US Army Medical Research and Materiel Command, Fort Detrick, Maryland, grant number DAMD17-99-1-9052, Principle Investigator, Dr Boehmer. The data collection was supported by the Department of Veterans Affairs Health Services Research and Development Service grant SDR-93-007.

Prostate cancer (the most common cancer in men) has a considerable impact on the quality of patients’ lives. After a frightening diagnosis, the treatments cause a variety of unpleasant side effects. In the case of metastatic disease, hormonal treatment through either orchiectomy or a permanent regimen of medications to suppress testosterone causes nausea, hot flashes, loss of muscle tone, and erectile dysfunction.¹ The complex psychosocial effects of diagnosis and treatment, such as changes in body and self-image, masculinity, sexuality, and uncertainty, are gradually recognized.² However, most investigations of quality of life have focused on the patients, increasing our understanding of how men respond to prostate cancer, but telling us little about how this disease affects the shared lives of men and their significant others. Prostate cancer threatens men’s survival and families’ futures. Sexual dysfunction following treatment has implications for both men and their intimate partners. Therefore, we explored the perceptions of men who have been treated for prostate cancer, and those of their wives, regarding the changes that were caused by prostate cancer and its treatment.

The effect of illness on marital quality is largely an unresolved area.³ Some researchers argue that there is no change—or if there is a change, it is a positive association between illness and the spousal relationship, because it brings spouses closer together.⁴ Others point to negative impacts on the marital relationship.⁵ It has been suggested that a worsening of marital quality can be explained by the financial implications of illness, the problematic behavior of the sick person, and the changed division of labor in the couple, including the loss of shared activities.⁵ A decline in marital quality is often perceived by spouses who suffer from increased stress and depression because of their spouses’ disease.^5,6 Research on couples coping with illness has highlighted the importance of open communication for positive adjustment by patients and their spouses.^7,8 But couples’ ability to communicate varies,⁸ and many avoid truthful and open communication with each other⁹ and with other friends and family members.¹⁰

Only a few prostate cancer studies have considered the patient’s social context. Studies that include spouses point to the interrelationship of their reactions to prostate cancer.^3,11-17 We focussed on couples’ communication about prostate cancer and its treatment effects.

Methods

Our study is part of a larger investigation of the psychosocial effects of metastatic prostate cancer, that had the development of quality-of-life scales as its goal.² We recruited a convenience sample of men who had undergone treatment and some of their wives. After we obtained informed consent, 15 focus groups were conducted with patients and 2 were conducted with the wives. The wives participated in focus groups immediately after their husbands, which minimized the opportunities for them to discuss the content of their respective focus groups. A medical sociologist and a urologist (both men) conducted the sessions, which were videotaped and transcribed for analysis.

We examined what the 20 married participants said about their experiences with prostate cancer. The husbands had an average age of 69 years; 11 were white, 9 were African American; 13 had undergone orchiectomy, and 7 were receiving monthly injections to suppress testosterone. Of the 7 wives, 5 were white and 2 African American.

We analyzed these data according to grounded theory methods of qualitative analysis.¹⁸ Thus, we developed codes to interpret the content of focus group participants’ accounts and then inductively developed summary themes characterizing their expressed experiences of prostate cancer. This method involves constant comparison of analytic codes. Within the set of 20 husbands, we compared how they described their communication with their wives in the context of discussions with other men. Then we compared within the set of 7 husband-wife pairs how each party described their communication with their spouse. The first author analyzed all data, and the second author independently analyzed a random selection of the data for validation. Disagreements in interpretation were resolved by continued comparative usage of the data, revising the codes and themes.

Results

The focus groups used an open-ended unstructured protocol. However, all discussions included questions about the perception of changes, including physical changes, sexuality, oneself or one’s spouse.

Physical Changes

Both husbands and wives readily answered questions about the occurrence of physical changes after prostate cancer treatment. Most men were forthcoming with descriptions of physical changes such as fatigue, hair loss, hot flashes, and weight gain. In their focus groups wives confirmed their husbands’ experience of these changes. Wives learned about these complications in 2 ways. Most men told their wives about their changed physical conditions. Some men, however, were silent about their physical well-being. In these cases, wives relied on nonverbal communication and close observation of their husbands. One man said, “I’ve slowed quite a bit. My wife, she worries about me more than I do myself. She watches every move I make when I’m around there. I don’t know why, but she keeps her eyes on me.”

Coping with Physical Changes

There was variation in couples’ communication. It ranged from sharing information to dealing with feelings in complete isolation. Two men whose wives were not interviewed had not told their wives they have prostate cancer. They reasoned that their wives would not be able to handle the information because they would associate cancer with death. In the Table 1 we present responses from one couple that express how both spouses noticed and had feelings about physical changes but avoided talking with each other about them.

Wives’ perspectives on couple communication were that verbal exchanges about feelings do not generally occur, but the reasons for this vary. Wives admit to not asking based on a fear they might stir things up in their husbands or create problems that were nonexistent for their husbands. Other wives expected their husbands to hide feelings, thereby admitting that their mental well-being is interrelated. For example, one wife said, “I don’t know if he worries about his death because if he would get down, I would get down. So he hides it very well.” Others stated that men refuse to talk about their feelings even when they are asked about their well-being. Despite this emphasis that the men were the ones who were not communicating, other women revealed that they were participants, by hiding their emotions or avoiding questions to protect their husbands.

The men’s statements indicated that they had a hard time adjusting to their physical changes and that they were not comfortable disclosing their feelings about these changes. They expressed feelings of embarrassment and shame about their physical changes. Also, the men stated their fears and how they withhold them from their wives. One man said:

The main thing is that you worry. A normal pain that you normally wouldn’t pay any attention to before, now you say, well maybe the cancer has spread to there…. My wife worries about that if I have a little ache or pain. I don’t normally tell her, because if I do, she goes crazy. So you have to be very careful with your wife, too.

Men generally pull themselves together. Reasons for the men’s reticence in showing emotions were either that they were protecting others, such as their wife and children, or that it was self-protection from the reactions of their wives.

The wives were more verbal about the despair they felt. Most of the men downplayed the implications of the cancer diagnosis or cancer treatment on their lives. They made statements such as “nothing has changed” and “life goes on as before.” This might partially explain the couples’ lack of communication about feelings and fears about cancer and how it alters men’s lives. Couples in general, but particularly the men, wanted to get their lives back together and move beyond prostate cancer. This desire may be so strong that it undercut the couples’ communication about fears and other feelings. One outcome of avoiding conversations is uncertainty about each other’s feelings or thoughts. This became most apparent when one of the wives questioned the interviewer about what their husbands shared in their interviews, wanting the interviewer to indicate what is burdensome to their husbands. She reasoned that knowing this would help them to support their husbands better.

Although not communicating openly, many of the couples used jokes and teasing to make each other comfortable. At the core of the jokes were important emotions, such as fears, that they seemed not to dare voice otherwise. Although the jokes transmitted some feelings or fears, they did not facilitate couple communication. The wives told jokes to build up their husbands’ morale, while the men used jokes to couch their fears. For example, one man indirectly revealed his fear of dying. His wife stated, “He is always asking me to lose weight, and he’ll say, ‘Now [wife’s name] you’re going to have a hard time getting another husband, if you keep putting that weight on.’”

The men’s communication with people other than their wives was even more restricted. Not all men feel comfortable enough to reveal their diagnosis to family and friends. Some of the men relied on their wives to inform others about the diagnosis, and the men who told others reported talking predominantly to other men. If they had children they talked to their sons, while not necessarily telling their daughters. If the men had conversations with others, the information was limited to stating the diagnosis and the outcome of check-ups. No man reported ever turning to other men to deal with feelings or fears about cancer, even though they assumed that some of their friends might have it as well. At best, men received factual information from other men but never emotional support or information about others’ experiences and adjustment to the disease. The wives’ communication network was larger and the quality of their support network different. Generally wives reported that others, such as daughters, relatives, church members, and neighbors who were friends, were available to them for support.

Perceptions of Changes in Spouse

Despite the complicated communication patterns, including an avoidance to disclose feelings about the effects of protate cancer, most couples denied that cancer caused other changes in their mates or in their marital relationship. Most of the couples denied that cancer caused other than physical changes in their mates or their marital relationship. The men generally said that their wives treated them just the same. Most of the wives confirmed this, stating that they have not increased their attention. However, the accounts by the husbands and the wives make references to changes that did occur. One man told the interviewer that his wife finds him difficult to get along with since his cancer treatment. Another man admitted being frequently irritable and having angry outbursts. Another change that was reported involved the men’s altered social network. Some wives talked about a decrease in their husbands’ interactions with friends. Some husbands confirmed that they underwent certain social changes. One husband stated that they socialize more as a couple, since he believes it to be important to his wife.

A few wives reported changes, such as their husbands’ jealousy. The women said that there was no reason for their husbands to be jealous since their commitments to their husbands remained unchanged. Jealousy was also brought up in the men’s focus groups. Both husbands and wives told the interviewer about the breakups of other marriages. The women referred to wives who left their husbands because they had prostate cancer, and the men reported that other men left their wives because they feared their wives were betraying them. One man explained:

I don’t try to worry about it, because really if you go to worrying about it, a person doing something, you can’t do it and with the going out or something like that, but I will just let her go, you know, if I’m going to sit there and worry, cause I’m not going to try to hurt myself. Now I’m concerned where she goes, but I won’t think of that…. I don’t want it on my mind. If it ever got on my mind, she may as well be doing it, see what I mean. I don’t even think about it.

Although it was a small minority that voiced worries and fears about betrayal and jealousy, it was an indication that this emergence of insecurity might have been triggered by the most radical change in couples’ lives: their changed sexuality.

Sexuality

In the interviews, husbands and wives described the implications of prostate cancer on their sex lives. With regard to communication in couples, however, most communication about sexuality took place when men were presented with treatment options that had impotence as a side effect. Husbands and wives described how they discussed the threat of giving up their sex lives. One man said, “we had quite a few discussions…. We just cried a little bit and that was it.” The same man revealed that his decision to choose hormone shots over surgery was also influenced by the belief that if he were to stop taking the hormones his sexual functioning would return, and surgery was permanent. Another man disclosed that after surgery he was depressed for months because he lost his ability to have sexual relations.

Several women let their husbands know that when faced with a choice between prolonging his life and having sexual relations, they would opt for his prolonged life expectancy. One woman stated, “I would rather have him than sex until I am 100.” Some men described having been motivated by the same tradeoff. The men’s descriptions, however, are dominated by references to the difficulty of consenting to a treatment that deprived them of their sexuality. One man explained its importance by stating, “I wouldn’t care if I had to walk around straddle-legged or not if I could have sex. This testicle removal hurt the desire for my sex life. It took it, and it dissolved my self away.”

After the decision about treatment, however, when the treatments take their toll on men’s sexual functioning, most couples’ communication about their sex life discontinues. But the men were outspoken with the interviewer in their descriptions of impotence. They stated their inability to achieve an erection, their loss of a sexual urge, and that lack of sexual functioning threatened their masculinity. Also, the men’s accounts indicated that their definition of sexuality is intercourse. The men’s inability to achieve an erection caused them to restrain from any type of sexual interactions. Generally, the men described their wives as understanding and accommodating to their loss of sexual functioning. One man told the interviewer that his wife made sexual advances that he could not reciprocate. Many men held the belief that the loss of sexuality had little or no effect on their wives. They portrayed their wives as adapting well to the loss of sexuality, because in men’s opinions women know how to cope with this change. Religiosity was one coping style of wives that men mentioned to the interviewer, “My wife goes to church a lot. She found the Lord, I guess. It don’t bother her much. She don’t act like it does.”

Men’s accounts reveal that there is little knowledge about their wives’ feelings about the sexual loss. Men’s assessment that sexual loss means little to their wives was based on reasoning that it must mean little to them since they are not complaining. As one man put it: “As far as I know [it does not bother her]… Now if she had said something…but if it is, she hasn’t said anything. It could be bothering her, but she hasn’t said anything.”

The importance of sexuality was mostly proclaimed in focus groups with men. Some men confided in the interview situation that their sexuality was diminished before prostate cancer. With increasing age, sex became less frequent. Others admitted to problems with impotence before prostate cancer. One man stated that being with his wife has always been more important than sexual activity. The men’s coping with a lack of sexuality after prostate cancer included avoidance (by putting it out of their minds), as well as through resignation by accepting that sexuality belongs to their past. These coping styles preclude seeking conversations with their wives.

Overwhelmingly, wives are focused on the importance of sexuality for their husbands without ever indicating the importance they give to sexuality. Wives’ reports center on ways of accommodating to the lack of sexual relations. One wife said:

It doesn’t bother me. I just made up my mind that it can’t be, so I just keep it off of my mind. I do other things to keep it off of my mind. I just try to stay active doing other things. It hadn’t bothered me. It used to, it would bother me to hug and kiss him, but now it doesn’t since it is no longer that way. It can’t be. I just made up my mind. Consistently, wives stated how devastating the loss of sex is for their husbands, paying little attention to their own needs. One wife wished her husband could have an erection, because she believed it was crucial for his masculinity. Wives accommodated the lack of sex and made it known that they would never seek sex outside of marriage. Instead, they did everything they could to build up their husband’s self-esteem by reassuring him that his masculinity was not tied to sexual performance. Wives confirmed that there is no sexual activity of any form; one wife even stated that her husband is less caring or romantic since his sexual dysfunction. Another wife reacted surprised to the interviewer raising the possibility of sexual activity. The avoidance of communication about sexuality leaves spouses on their own when adjusting to sexual loss.

Discussion

The focus group interviews with men and some of their wives provided us with insight into couples’ experiences with prostate cancer. Their perspectives contribute toward understanding the implications of prostate cancer on the marital relationship. Our analysis is greatly influenced by the suggestion of previous studies that open communication among spouses is important for a positive adjustment by patients and their spouses.^7,8 We find that most of the men are capable of communicating the factual physical changes, while they appear unwilling, or perhaps unable, to communicate with their wives about their feelings regarding these changes.

Limitations

The inclusion of spouses in studies that focus on the well-being of men with prostate cancer is imperative. However, we are aware of the limitations of the wives’ focus group data. In addition to the small number, our study’s focus restricted the interviews with wives mostly to their assessment of their husbands’ well-being. The women had little opportunity to discuss their subjective experiences. Also, the focus groups with wives were conducted by 2 men. One can speculate that discussions of sensitive matters such as sexuality may be constrained when the interviewers are of the opposite sex. The same-sex environment of the men’s focus groups, however, may have elicited frank and honest accounts. Our limited sample prevents us from exploring specific cultural differences in couples of different racial or ethnic background. The conclusions we reached were affected by the preliminary nature of our study. In particular, we have no information about the couples’ marital relationship and communication styles before the diagnosis of prostate cancer. Other research indicates that couples’ communication patterns after a diagnosis are similar to the style they had before the diagnosis.⁸ Also, our study’s findings may be affected by the stage of disease. Future prospective studies that measure psychological well-being of patients with prostate cancer and their partners need to consider the important issues raised by our study. In particular, the apparent contradiction of not communicating about fears and death while claiming marital satisfaction warrants further research. Larger studies will have to demonstrate the benefits of disclosure of feelings on adjustment before care providers are asked to contribute to open communication between spouses. Nevertheless, the findings of our research indicate that the inclusion of spouses in research expands our understanding of the effects of prostate cancer on well-being.

Lack of Communication

The data give no indication that men deal with cancer by discussing fears of death and dependency with their wives. Instead they express a desire to put the cancer behind them, “to be done with the disease.” The men presented themselves as having adjusted to the disease with a self-identity that is unchanged by prostate cancer. Their lack of communication about emotions received little challenge from their wives. Moreover, the wives collaborated in that they hid their own fears and despair instead of pursuing spousal communication about emotions. Thus, protective buffering is the prevalent coping style by both spouses, confirming the findings of earlier research that spouses’ coping styles and emotions are interrelated.^7,19,20

This is problematic for 2 reasons. Earlier research indicates that there is an inverse relationship between protective buffering and marital satisfaction, as well as a strong positive association between protective buffering and patient and spouse distress.⁷ The couples with metastatic prostate cancer claim that there is little change in their mates. They overwhelmingly portray themselves as happy and content with their marital relationship. Contrary to this depiction, references to moodiness and the emergence of jealousy point to strains on the marital relationship. Also, lack of communication leads to uncertainty about their spouse’s feelings and thoughts, another potential strain on the marital relationship. Although our study does not entail an assessment of men’s and wives individual or joint adjustment to prostate cancer, we certainly find evidence of the risk factors for poor adjustment which previous studies indicate: lack of communicating and protective buffering. Also, losing or abandoning one’s sex life, as in our sample, is a significant change that most likely has a strong association with psychological well-being, as found in earlier studies.²¹ This appears to suggest that the couples with metastatic prostate cancer may be at risk for distress and poor adjustment.

Conclusions

These insights into couples’ coping styles are of special relevance to physicians who care for men with prostate cancer. Generally, physicians are open to married men involving their wives in the management of prostate cancer. However, our findings raise questions about how involved wives really are. Although women are interested in their husbands’ prostate cancer, the lack of communication within the couple suggests that their active involvement may be less than is commonly assumed. Care providers may positively influence patients’ adaptation and quality of life by facilitating involvement by the patient’s wife, rather than assume that her presence alone signals active involvement. Also, physicians can suspect that patients who choose to go through treatment by themselves may be at risk for poor adjustment to their diagnosis.

Related Resources

• National Prostate Cancer Coalition http://www.4npcc.org/Advocates.htm/
• US TOO, International http://www.ustoo.com/
• Online Decision Support for Prostate Cancer http://www.cancerfacts.com/

· Acknowledgments ·

Support for our research was provided by US Army Medical Research and Materiel Command, Fort Detrick, Maryland, grant number DAMD17-99-1-9052, Principle Investigator, Dr Boehmer. The data collection was supported by the Department of Veterans Affairs Health Services Research and Development Service grant SDR-93-007.