Assistant Clinical Professor
Department of Dermatology
University of California, San Francisco
Clinical Psychologist
UCSF Melanoma Center
address:
UCSF Comprehensive Cancer Center
1600 Divisadero Street
San Francisco, CA 94115

(Article published in SP Leong ed, Surgical Clinics of North America,Vol. 83(2) WB Saunders Co.,2003, pp 417-430)

It goes without saying that melanoma patients have a great deal to cope with. This is true, of course, for all patients with a life-threatening diagnosis. There are many aspects of a person, and of a person’s life, that are threatened and disrupted by the diagnosis and treatment of a cancer, such as melanoma (1). Research has found that different ways of coping with these threats and disruptions are associated with differences in one’s psychological adjustment and emotional well-being over time (2). It appears that some ways of coping are generally better than others, in the sense that they are more conducive to a good quality of life (physically and emotionally) when dealing with a serious illness.

This essay addresses three topics concerned with coping. First, what has the research on coping with cancer identified as being constructive or positive ways of coping? Second, what are some of the common obstacles that make it difficult for patients to cope in these positive ways? Third, how can health care professionals help patients to overcome these obstacles and thus help them in the process of coping?

As a construct, "coping" includes attitudes and behaviors that have an adaptive intent when dealing with a threatening situation (3). That is, the person adopts ways of thinking and ways of behaving that aim to address the situation in a constructive manner and that aim to safeguard his or her emotional state and to promote adjustment. This construct is relatively new in comparison to the related construct of defense mechanism. The later construct focuses on what the person is defending against (e.g., impulses, troublesome thoughts, emotional upset), while the coping construct focuses on what the person is doing in a positive effort to meet stressful life events. Coping is also a broader construct that covers a wide range of behaviors and thoughts that are employed to deal with these events.

The issue of coping, and thus of emotional well-being, is especially relevant for melanoma patients because the immune system is affected by one’s emotional state (4-6). The link between emotions and immunity occurs because immune cells, through specific receptors, respond to many of the hormones, neuro-transmitters, and neuropeptides that are affected by stress (7-8). Enzyme levels necessary for the repair of mutated DNA have also been found to be lower under stressful conditions (9). These findings suggest that melanoma patients may be able to promote a more effective immune response by virtue of how they cope with the stressful aspects of their illness.

This point was illustrated in a clinical trial with melanoma patients on the efficacy of a six-session group intervention program, which focused in part on the kind of coping strategies discussed below. Those who participated in this program showed more positive changes in their coping and greater improvement in their emotional state than the control group, and this improvement was associated with an increase in certain types of natural killer (NK) cells and an increase in the tumor-fighting potential of NK cells (10). In their follow-up study, the researches found that these changes were associated, in turn, with improved 5-year recurrence and survival rates (11).

In what follows, an effort is made to glean 10 positive coping strategies from the vast amount of research on coping with cancer, and to discuss these in relation to coping with melanoma. These strategies have been associated with improved problem-solving, adjustment, resilience, and emotional well-being in groups of patients. They are not applicable, however, for all individuals. The style of coping that works best for one person may not work so well for another. What works best for any one person depends on many factors related to that person’s personality, current life situation, and past coping behavior (12). Moreover, a patient’s coping strategies will be tailored to the specific demands posed by his or her diagnosis and treatment regimen, and these vary from case to case. Coping with cancer is a process that goes on over months and years, and patients use different strategies at different times, depending upon the changing situation within themselves, their relationships, and with their illness (3,13). Despite these caveats, it is nonetheless true that research on the coping strategies discussed below has shown a general association with improved adjustment.

Different patients respond in different ways to their diagnosis, the initial medical work-up, subsequent tests results, and the implications of all that is happening to them. Many patients respond by confronting the full reality of their illness: they ask pointed and brave questions about the seriousness of their condition and the pros and cons of the various treat-ment options, and they read up on these matters on their own. They react as if they are strongly motivated to know what they are facing; and this way of coping has been found to promote one’s psychological adjustment (14-16).

Other patients react as if the realities confronting them are too much to deal with and they therefore retreat into a denial of these realities. It sometimes seems that a patient in denial is saying, in effect, "I can't cope with all this." Actually, the denial is a way of coping. It protects the person from being overwhelmed. But it can also prevent a person from coming to terms with the illness and getting on with other more constructive ways of coping; it is therefore associated with a poorer psychological adjustment in the long run (17,18).

In the short run, denial is often a positive coping strategy because it enables the patient to gradually face the reality of his or her illness-- not all at once, in a way that might bring a flood of intense emotions, but in a step-by-step manner as the person feels in less danger of being overwhelmed or feels more supported by loved ones (19,20).

When a person is diagnosed with melanoma, the first issue confronting the person, in terms of coping, is this: How much does the person want to know about the nature of the primary lesion, the risk that it poses, and the relevant treatment options? Health care professionals can help patients to face these questions by the manner in which they relate to the patient, and to the diagnosis itself. If a physician offers very little information, it can convey the message: "You don’t want to know and you don’t need to know." It can also convey the message: "This is too upsetting to discuss." Patients often comply with these messages by asking very few questions. Conversely, if a physician explains the seriousness of the diagnosis, because of the risk of metastases, and encourages a discussion about melanoma and the medical treatments, then the message is conveyed: "This is not too difficult to face. It’s important that you know about the risk, and about the treatments." This message helps the patient feel more capable of facing these realities and asking relevant questions.

If the first step in coping is to face reality, the second step is maintain hope and optimism in relation to that reality. Not surprisingly, patients who are hopeful and optimistic show a better adjustment to their illness than patients who are pessimistic (21-23). In some studies, optimism has also been associated with improved medical outcomes (24-25). For example, patients with stage 4 melanoma who were optimistic about the treatment regimen were found to live longer than those who were considered to be more "realistic" (26).

Most patients tell themselves to be positive, but for many, this is easier said than done. This is certainly true for patients with melanoma (27). Feeling optimistic that the disease will not recur implies that the person feels lucky. But many patients feel they were unlucky to get melanoma in the first place, and thus feel like an "unlucky person." Therefore, they cannot expect that they would now enjoy the good fortune of a long remission or cure. For some, optimism can also seem presumptuous: after all, other patients with the same diagnosis have not done well, and a person might think, "What right do I have to expect that I will do better?" Optimism could also make a person feel that he or she were not worrying enough about the risk posed by melanoma -- that is, that the person was not giving melanoma the fear it deserved, that the person was acting too bold or confident in the face of it, and thus asking for trouble...as if the melanoma might recur to teach a lesson. Finally, if a person’s prognosis is more favorable than other melanoma patients, he or she may feel that it is not right to enjoy this good fortune or to take advantage of it (that is, by being optimistic and going forward with one’s life in a positive and constructive manner). The bottom line is that patients often feel that it is wrong and dangerous to be too optimistic. Sometimes patients are not fully aware that their optimism is being inhibited for these reasons.

Given these issues, how can health care professionals help patients feel an appropriate degree of optimism? The following section addresses this question.

For most melanoma patients, the medical situation provides a basis for hope and a basis for worry. The statistics that apply indicate a certain chance of survival, but also a certain risk that the melanoma will prove fatal. Ideally, a patient’s emotional response would take both aspects into account: he or she would experience a degree of hope that was proportional to the positive survival chances that applied, but would also experience a degree of worry and emotional upset that was proportional to the mortality rate in similar cases. In other words, the patient’s emotions would be mixed and (ideally) proportional to the negative and positive aspects of his or her prognosis.

A patient’s emotions should also be in balance, in this sense: when he or she was feeling worried or upset, these feelings should be reduced in intensity, or tempered, by feelings of hope and optimism. Alternatively, the nature and intensity of one’s positive emotions should also be tempered by, or take into account, the possibility of disease progression (even if the risk is relatively low). If the person is totally ignoring this possibility, then his or her optimism will feel false because the person will unconsciously know that it is based on some denial or minimization of the risk involved. It is better to acknowledge the life threatening nature of melanoma and to work through the negative emotions that stem from it (14,15). Patients then feel justified in also embracing the positive aspects of their situation, maintaining appropriate optimism, and keeping their sights set on getting better (28).

A number of studies have found that patients who maintain this kind of mixed emotional response -- well-proportioned to the realities of their illness, and well-balanced -- enjoy a better psychological adjustment than patients who feel mostly pessimistic or mostly only optimistic. For a review of these studies, see Heim (2).

When health care professionals acknowledge that the situation is mixed, and that a mixed emotional response is warranted, they are actually helping their patients to experience an appropriate degree of optimism. This is because they are not denying the negative aspects, but they are also not denying the realistic basis for hope. This helps patients to face the reality of their illness, but also supports them in feeling a valid sense of hope and optimism. And when patients do the former, they then feel entitled to do the later as well.

Thus far, we have talked about facing reality and how to feel about that reality. This section address the importance of emotional expression. People differ on how good they are at this skill, and in our society, women are generally better at this than men. Many studies have shown that patients who express their emotions and concerns enjoy a better psycho-logical adjustment than those who tend to suppress their feelings or keep quiet about them (11, 29-31).

Emotional expression is usually helpful because it gives the person an outlet for their feelings, a means of working them through, and an opportunity to obtain better emotional support. It can be an enormous help just to know that one’s feelings are understood by others and seen as valid, but this requires open communication on one’s part.

There are many reasons that patients keep their feelings private and try not to let on how they really feel. For many, this is simply learned behavior, as when children are taught "to be seen but not heard." People also learn not to express their emotions if doing so tends to lead to negative consequences (e.g., being criticized, or having one’s distress trivialized). A person might feel that his or her emotional needs are an imposition on others, and that it was their role to take care of the feelings and needs of others rather than expressing their own. It is not uncommon, for example, for cancer patients to hide their true feelings as a way of protecting their loved ones.

Some people do not express their emotions because they are not very adept at even paying attention to what they are feeling. They seldom stop, check in with themselves, and try to identify the feelings and concerns that are weighing upon them. Children need permission and encourage-ment to develop this skill, and then some practice and positive reinforce-ment. In this process, a person can learn that his or her emotions are important and valid, and thus worthy of attention and expression. Some people do not have much experience with this essential ability, and even regard it as pointless or self-indulgent.

Cancer patients are consistently encouraged to "keep a positive attitude." This often makes a patient feel that there is something wrong or dangerous about their "negative" emotions (32). The research evidence is just the opposite: experiencing and expressing such emotions is psychologically healthy and beneficial to one’s immune system as well (11,29,30).

When health care professionals trivialize a patient’s distress, the open expression of such distress is inhibited (33). Conversely, the health care tean can help considerably by acknowledging the validity of a patient’s distress, encouraging expression, and offering support.

Cancer patients differ with regard to the amount of support available to them, and with regard to how much they tend to reach out and take advantage of the support that is available. Those patients who have at least a few loved ones available for close emotional support and who call upon their support or practical help show a better psychological adjust-ment to cancer than patients who are largely alone or tend to "go it alone" in coping with their illness (34-36).

In a randomized clinical trial, melanoma patients who participated in a six-session support group showed an improved emotional state and coping behavior, as well as better immune measures and a lower recurrence rate, than did patients in the control group (11). This group experience encouraged patients to express their emotions, gain support from each other, and cope in other positive ways.

Patients often neglect to reach out for the support they need. It may be that they are not especially adept or inclined to check-in with themselves regarding their emotional needs or the practical ways that others could help. They may pride themselves in being independent and self-sufficient. A patient might feel that others would be "bothered" by his or need for support or help or would resent being "imposed" upon. Of course, if this were really the case, it would be counter-productive to ask such people for help; but more often than not, this is an assumption based on earlier experience.

An additional problem stems from the kind of support that others offer, which can be a kind of "cheerleading" to keep a positive attitude.While patients generally appreciate the positive intent behind this, it can cause them to hold back in sharing their fears or sorrows. Often, patients would rather hear that others understand how they feel, regard these emotions as valid, and will stick with them regardless of what happens.

Health care professionals can help by being attuned to a patient’s emotional needs, offering support, and encouraging the patient to be aware of his or her support needs and to ask loved ones for support and practical help. Patients should also be encouraged to consider participation in a support group.

How much initiative does a patient take to promote the best possible outcome? As with the other coping strategies discussed above, patients differ on this score. Some patients tackle their cancer head on. They have a strong fighting spirit, and they find ways of putting it into action. They go out of their way to learn about their illness and the options for treatment. They actively pursue the best treatments available, and consider alternative or holistic approaches as well. In surveys, they strongly agree with the statement: "A lot depends on what I do and how I take part." Research has shown that patients who respond in this manner have less emotional distress than patients who respond in a more avoidant or passive manner (35-38).

Patients who adopt a participatory stance believe they can make a difference, and they put this belief into action. They therefore feel less helpless and vulnerable. This is a main reason that their emotional state is better. A person’s belief that he or she is an active and effective agent is called "self-efficacy," and the research has consistently documented its positive emotional effects (39,40).

It is especially important for melanoma patients to actively participate in the recovery effort. Patients with metastatic disease who discuss the pros and cons of the different treatment options with the medical team, and thereby participate in decision making, feel more engaged in the treatment plan and are better able to embrace it and stick with it. This kind of proactive coping has been associated with improved mood (41) and, as mentioned at the outset, this could promote improved immunity and survival. Patients can also participate in the recovery effort by improving their overall health habits, which in turn can benefit the immune system.

Health care professionals can help by engaging patients in decision-making about the treatment options, and by encouraging patients to improve their health habits (if necessary) and to adopt the kind of positive coping strategies discussed here. Physicians might make the point that patients have a role to play, in concert with medical interventions, and that a collaborative effort can maximize the chances for success. This effort to engage patients as partners in promoting the best possible outcomes helps to overcome the passive, helpless stance that patients sometimes adopt and that is associated with poorer psychological adjustment (2, 41).

While the diagnosis and treatment of cancer is an awful experience in many respects, it can also be a challenge and even an opportunity for positive change in a person and in a person's life. In response to their illness, many patients step back and take stock of who they are and how they have been living. They reflect on their ultimate values and priorities, and often identity changes that are warranted (and perhaps overdue) in their life-style and personal relationships. They often comment that they are more attuned to their experience in the here and now, that they try to relish all the positive aspects of living, and they no longer take life for granted. These changes are often called the "enlightenment" or "gift" that comes with cancer, or the "wake-up call" aspect of cancer. Patients who embrace this aspect of their cancer experience have been found to be especially well-adjusted and better able to deal with the many trials and disruptions caused by their illness (25,42-44).

A variety of changes can occur when patients reflect on the degree to which they are living in a way that is true to their ultimate values and goals. These include spending more time with family members and close friends, making a greater contribution to the causes a person believes in, showing more appreciation for the positive aspects in one’s life (this if often called "counting your blessings"), bringing forth aspects of one’s personality that have been suppressed, pursuing life-long interests that have always been on the back burner, and seeking to be more honest with oneself and with others. These are some of the ways that a patient’s illness can become an impetus for positive change.

These issues are certainly relevant for many melanoma patients, especially those with metastatic disease. Even newly diagnosed patients, whose primary lesion was caught early, often note that the diagnosis was a kind of "tap on the shoulder" that causes them to reconsider their life-style and priorities.

Sometimes the idea that there is a message or lesson in one's cancer implies that the person needed to get cancer and perhaps even got it for that reason. Certain "New Age" writers have encouraged patients to reflect on why they "needed" their illness. Such ideas have been found to foster feelings of self-blame, guilt, and depression (45,46). A more psychologically-healthy response was voiced by a patient who said: "It's too bad that it took cancer to make me see things a bit more clearly, but you know, some positive things have come out of it for me" (47).

Most people in our society have some fundamental spiritual beliefs, and these beliefs can be called upon for help in dealing with cancer. Patients who do so benefit in a variety of ways: they have a greater sense of peace, inner strength, and ability to cope, and show an improved psychological adjustment and quality of life (35,48,49). These benefits derive especially from the perspective offered by one’s religious faith or spirituality and from the power of prayer and religious ritual (50).

It is part of the human condition, of course, to be confronted with vulnerability to disease, and with the inevitability of suffering and death. For some, these realities lead to a kind of existential despair. The world’s religious and spiritual traditions offer a different perspective, one that looks beyond these realities, or that penetrates more deeply into them, to find meaning and value that transcend one’s individual existence or plight. This is one reason that cancer patients often turn to these traditions, and to their personal faith, for help in dealing with their illness.

An example concerns the "Why me?" question. Patients often ask, either in open protest or private anguish, "Why did this have to happen to me?" Of course, the common rational answer is that it did not have to happen, it just did. Nonetheless, there is often an emotional poignancy to this issue that cannot be easily dismissed. The reasons for this are largely religious and cultural. It is difficult to reconcile how the God of the Bible (who is almighty, loving, and just) could allow cancer to happen to a good person. It is not uncommon for patients to wonder if the illness is a just punishment for certain wrongs or failings of character. And because of the influence of the Judeo-Christian tradition on our culture, people often assume that what happens to a person is somehow linked to what the person deserves. The nature of a malignancy, as a destructive force originating from within, also lends itself to the notion that it implies something bad about the person who has it.

Through prayer and liturgy, patients are able to connect to their god and to their religious community and derive the solace and fortitude they need to cope with their illness. Patients often speak of the spiritual healing that comes through prayer, and there is some evidence that prayer may also a role in bodily healing (52,53).

There are many ways that the experience of cancer can harm a person's self-esteem. One of these is the stigma of having cancer that was alluded to above -- that is, that it can imply something bad about the person who has it. In addition, many of the sources of a person’s self-esteem can be threatened by cancer and the effects of medical treatments: one’s bodily appearance, physical abilities and activity level, various personal attributes (such as being healthy and independent), and role and identity within one’s family and/or work life.

Melanoma patients must often undergo disfiguring surgery, and those with metatastic disease are often unable to carry on with their normal activities due to medical treatments or the effects of the disease itself, such as pain or fatigue. For many, the activities that are compromised or rendered impossible had been an important part of their identity and self-esteem.

Research has shown that such threats to self-esteem pose a danger and an opportunity. The danger is depression and, with that, the weakening of the will to live and the resilience the person needs (54). The opportunity lies in finding additional sources of self-esteem (44,55). For example, a person might take pride in the way he or she is coping, or have a new appreciation for being loved independent of looks or performance. For some, it has been difficult for them to depend on others because they had prided themselves on being self-sufficient; they might now take pride in their ability to express their needs and ask for help. A person’s spirituality could be deepened by having cancer, and this could also help to renew one’s self-esteem.

Research has also shown that patients who continue to do the things that are important to them, to the extent possible, enjoy a better psychological adjustment than those who too quickly abandon these roles and activities or expect too little of themselves because they have cancer (56). One study specifically noted that patients need to "deal with the cancer" but also to "keep it in it's place" (28).

Health care professionals can help patients to maintain their self-esteem by encouraging them to carry on with their normal activities and roles as much as possible, and to embrace new sources of self-esteem as discussed above. A physician or nurse can help, for example, by noting that one’s illness does not suddenly define them as a cancer patient, as if that is their new identity.

It may seem that a major challenge, when dealing with cancer, is to fight against the possibility of death rather than work on coming to terms with it. Modern medicine understandably focuses on health and healing. The practitioners of alternative therapies also stress their unique healing potential. From all quarters, cancer patients hear that they must maintain hope, keep a positive attitude, and never give up. It seems that everything revolves around their getting better. And yet many patients die of cancer, and even those who do not are living with the possibility that they might. There is very little support offered to patients in coming to terms with this possibility and reaching some sense of peace about it, and in not feeling that it is a failure and outrage to die (57).

This is a touchy topic. Who can say that a person should accept the possibility of dying of cancer, and therefore not rail against it and do everything possible to prevent it? Even if one’s cancer progresses to a terminal stage, it would seem presumptuous to say that one’s death should be accepted. Facing death is profoundly personal and inherently difficult. Nonetheless, research has shown that many patients do come to terms with death and enjoy a sense of peace that acceptance brings (47,58,59).

A patient can put off dealing with death until the time comes, or face this possibility in the course of dealing with his or her illness. The later approach has been found to be helpful. Facing the possibility of dying of cancer can cause more fear, desperation, and inner anguish if the person is not also striving to come to terms with this possibility. This does not mean that the person dwells on it; it means that issues involving one’s life and death are confronted, which then enables the person to go forward.... living in the fullness of life, one day at a time, rather than in the dread of what could possibly happen (60).

The work of coming to terms with death can draw on one’s religious, spiritual, or philosophical beliefs about what is important in life, and why (61). These beliefs can provide meaning and purpose to one's life as a whole, and therefore consolation when facing death. Many people have been able to feel that their life has been about something important and of lasting value. This is one of the major ways that one’s religion or spirituality can help (62).

Health care professionals who are caring for patients with metastatic melanoma can help by bringing up the issues discussed in this section and by referring patients to some of the works cited. Many patients struggle with these issues and long for a sense of peace, but feel forced to do so quietly because they have so little support for this important, inner work. As one patient put it: "I can’t tell anyone I’m thinking about these things, because everyone wants me to be positive" (63)

The coping strategies discussed above are not right for everyone, but there is good evidence that they are generally helpful to patients who are dealing with cancer, including melanoma. The bottom line is that these strategies help patients feel better and stronger. They feel better because they are facing the illness squarely and working through its emotional impacts, and yet also keeping a perspective on it so that it does not define them or take over their life. Through all the trials and challenges that cancer can bring, they are keeping their wits about them and able to carry on. They feel stronger because they have support, from other people and from within themselves. They have taken stock of their most cherished reasons for living, which strengthens and sustains them in their fight against cancer. And yet they also feel that their survival is not the only important objective; the quality of their lives and relationships, the values they live by, and their spirituality also deserve attention and effort. They have the peace of knowing that their death from cancer, if it comes to that, will not obliterate the meaning, value, and joy that their life has given to them and their loved ones.

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