Psycho-Oncology

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Contents

Introduction

Psycho-oncology is a field that relates to the psychological aspects of cancer. This may involve psychological infuences at the onset and during the course of the cancer, effects of psychotherapy on cancer growth or survival, or it may involve the quality of life and psychosocial issues relevant to cancer patients.

This section is about psychological influences on cancer. What contributes to getting ill, what helps to heal? The late Marco de Vries, pathologist and psychotherapist, together with Van Baalen, compared patients who experienced spontaneous regression of cancer with patients with progressive cancer. It appeared, that all patients with spontaneous regression of cancer had presented a sudden change toward increased autonomous behaviour and/or in their attitudes toward their illness, treatment and environment. About one of these patients, her susters said: "In the past she was willing to do everything (we asked of her) and now she is quick tempered and troublesome". This change had preceded the first signs of clinical improvement. Interestingly, all patients had gone through an experiential process, with profound fluctuations of mood [1]). Collecting new cases of spontaneous regression of cancer, Schilder at al. (2004) [2] observed that these patients got access to essential activities and experiences prior to the regression of their tumours. Increases in autonomy were intimately related to this access. The actual realisation of this access to essential activities and experiences was the most precise start of the clinical improvement. In two patients a religious event was seen prior to healing. Ikemi, a Japanese investigator of spontaneous regression of cancer, called the psychosocial change an 'existential shift'[3]. Similar observations have been done by Weinstock [4] and Roud [5].

One case of spontaneous regression of cancer may serve as an illustration: The patient was a man, aged 63. Eleven years prior to this patient’s diagnosis, his wife had left him because of his alcohol use and related behavior. According to her, he had kept her at a distance during all of their marriage. They never officially divorced, and they still met occasionally. When she did leave him, she promised that if he ever would really need her, she would be there for him. After the wife had moved some kilometers away with her new friend, the patient got ill.

CT scan showing abnormal tissue around the abdominal aorta. From below-right (which is on the left side of the body) a biopsy needle is inserted into the abnormal tissue. Schilder et al, 2004, Clinical Case Studies

Multiple abdominal sites of poorly differentiated adenocarcinoma along the aorta and the hepatic artery were found; no treatment was available and the patient was informed in detail about the physical deterioration that was to follow.

Poorly differentiated adenocarcinoma

Following his diagnosis and prognosis, the patient immediately called for his wife. When she entered his room, they threw their arms around each other and, according to his wife, met as "one human being to another" for the first time in their marriage. His wife offered to accompany him on his visits to the consultant. They went weekly, each time drinking coffee together and talking. For the first time in their relationship the patient offered her some excuse for his problems with alcohol use during their life together.His wife felt that they "were now a couple" and that "something had been born" when they had thrown their arms around each other. Clinical improvement occurred over a period of 4 months.

Disappearance of poorly differentiated abdominal adenocarcinoma, 6 months after diagnosis, without treatment

No signs of tumor were seen on a CT scan 6 months following the diagnosis. The patient was healthy for 2 years. Following a decline in frequency of contact with his wife, he sustained a right-sided supra-clavicular recurrence, which was treated with radiotherapy. His abdominal tumors did not recur.


Findings in patients with spontaneous remissions have contributed to psycho-oncological understanding and counseling. Some studies of the effects of psychotherapy on cancer have shown positive effects, though others did not.(De Vries et al., 1997 [6] As De Vries used to say: 'False hope doesn't exist'. False expectations should not be raised, though. Much has as yet to be learned and developed. Nearly all patients, however, are satisfied when they explore the dimensions of their life, feelings and personality, regardless whether it has a measurable effect on the course of disease or not. It's like starting to live, even in the face of death. Or it is humerous and challenging, even with frightening cancer. And when it is sad and tearful, a face may become more radiant and decisive. 'The experience of disconnection is reconnection', as Yeomans has put it. And from reconnection come life, will, desire, feeling and expression, autonomy and relationships.

Psychological Factors and Onset of Cancer

Incidence of cancer related to emotional characteristics. Graves et al., 1986, Psychosom Med

Graves et al. [7] observed that ambivalent persons, with extreme emotions and poor control, had developed more cancer 30 years later. Also, being avoidant and withdrawn, was followed by a higher cancer incidence, as was being controlled: people with flat emotions and a somewhat reserved attitude. Lowest cancer incidence was observed in empathic and flexible persons: having a variable set of emotions, without running into the extremes of ambivalence.

Interestingly, these researchers had used the Rorschach test: a test with various abstract figures. The testperson is asked what he reckognizes in the picture. Although of old age, this test is a projective test, designed to observe more unconscious levels. Considering the importance of repression in cancer (see below) and in humans in general, we may be lucky that a projective test was used.

In a somewhat different approach, combining the Rorschach with a test on parental relationships, Shaffer et al. [8] observed highest death due to cancer in persons characterised as 'loners': people with lack of expected interests, and a poor relationship with parents. Higher mortality was also seen in 'bland normal' persons: persons with scores only in the mean. On the other end of the scale, lowest death was seen in persons with high scores on parental control, anxiety, depression and extraversion under stress.

The high scores on anxiety and depression etc. are interesting and relate to a basic and paradoxical aspect of psycho-oncology: 'symptomatic' persons, in a psychological sense, may fare much better than asymptomatic. See also the page on psychodynamics that follow. High scores on 'negative' affects may reflect a healthy expressive attitude, rather than a 'truly' more negative inner state.

To study the impact of loneliness, Reymold and Kaplan [9] used four sentences: 1. It’s hard for me to feel close to others. 2. Often when I’m with a group of people, I feel left out – even if they are friends of mine. 3. I tend to keep people at a distance. 4. I often feel lonely or remote from other people.

Persons that considered two or more of these lines true, showed higher cancermortality in the subsequent seventeen years. Mortality in the most isolated persons was nearly 3,5 times higher than in the least isolated.

The aspect of relationship with parents had been worked out by Thomas et al.[10] Persons who later developed cancer, had lower scores on the closeness-parents-scale than healthy controls. The authors added that the scores in the group that later would develop cancer, resembled scores as seen in patients who develop severe psychiatric disorders, including suicidality.

One of the possible mechanisms involved, is impaired DNA repair. Kiecolt Glaser and collegues observed that DNA repair was slower and less complete in high-distress individuals [11]. Yet, many more systems may be involved like, for example, stress induced elevations of cancerpromoting hormones, growth factors, vascularisation, or a decreased immune-system or inaccurate apoptosis.

Psychodynamics in Cancer

The basic thougt in (biological) psycho-oncology -as in much of psychotherapy- is that certain aspects of the personality have decreased contact with the conscious parts of the person that are experienced as self. Due to earlier life-experiences, parts of will, needs and demands, aspirations, feeling and desires have become repressed. LeShan [12], [13], one of the first to look at psychological dimensions in oncology, pointed to the presence of 'silent despair' and 'a foiled creative fire' in many of the cancer patients he studied and counselled. Similarly, de Vries summarized that a wounded inner child is at the core of many cancer patients' emotional pain and need. None of this has to be visible at first glance; not for the outer world, not for the patient either. Unfortunately, repression not only blurs the sight, it also has a negative effect itself on survival, as was found by Jensen [14]. Jensen used the Marlow Crowne social desirability scale and Taylor Manifest Axiety scale in 52 breast cancer patients. A high score at Social desirability Scale with a low score at Taylor manifest Anxiety Scale indicates repression. Some more tests were applied and led to the following observations: Quoting Jensen: "Repressors were: - More likely to report acting in a calm and confident manner and to appear unconcerned about their problems while being colourless and emotionally flat. - More likely to appear outgoing, talkative and charming, but concerned with appearing nice and attractive, rather than with solving their problems. - More likely to present themselves as responsible, confirming and cooperative while holding their feelings inside and trying to impress others as being well controlled and serious minded. - Less likely to report helplessness and hopelessness, to be easily hurt, to present a bleak and pessimistic outlook on life, to be hypochondriacal and experience fear concerning bodily functions. - Less likely to be unpredictable, moody and displeased with their physical and psychological state. - Less likely to report chronic stress. - Less likely to report recent stress, inadequacy of family and social supports, end emotional vulnerability. Repressors, in sum, consistently reported a picture of psychological health and minimal social or bodily disturbance." (end of quote). Recurrence free interval in non-repressors was one-and-half times longer than in repressors (1755 vs. 1204 days). Eight out of eleven patients that had died, were repressors. Medical variables accounted for 23 % of variation in course of disease, while psychic variables accounted for 44%. Psychological differences were independent from disease variables at the onset of the study.

Longer disease free interval in women with breast cancer with low repression. Jensen, 1987

So, repression not only complicates our assessments, observations and interpretations, it also, seems to have an effect of it’s own on course of disease.

Evidently, research into psychosocial factors and their relation with cancer easily leads to conflicting results, depending on the depth of the assesment and the moment in the life of the patient. Therefore, questionnairres may easily lead to conflicting data. Rather, in depth interviews, psychotherapeutic explorations and projective tests have the best chances to lead to valid data.

An even more complex area is the influence of earlier events in the family, including former generations, on onset and course of disease. Psychodrama and Family Constellation may suit the need for transgenerational exploration and correction.

A core problem in psycho-oncological therapy is that much of therapy reaches those parts of the person that are manifest in daily life -and in the session-, but not necessarily the parts that are most in need. As someone has said: "Much of good psychotherapy is given to the wrong part of the personality". In spontaneous regression of cancer we noted that - shortly prior to the regression of the cancer- certain situations, often negative and confronting, called for a new response by the patient. These situations seem to have elicited a 'new configuration' (phrase by van Zuuren) within the personality, leading to better, more active coping. A direct attempt to make a similar change can easily fail. Life may elicit more change in us, than we can do ourselves. The challenge in psycho-oncological therapy is to find ways to foster such changes, with the same strength and innate quality as one may see in patients with spontaneous regression of cancer. Role-play (psycho- or monodrama), dreamwork and bodily-experiential therapy hopefully come close enough.

Psychosocial Factors and Course of Cancer

Survival in breast cancer related to viewing oneself as 'original, independant, special' vs 'usual, as the others'. Forsen and Luoma, International Congress of Pyschosocial oncology, 1992, Beaune

Forsen and Luoma [15] observed that women with breast cancer who considered themselves 'original, independant, special' had longer survival than women who said that they were 'usual, as the others'.

Similarly: women with breast cancer who thought of themselves as willing to engage in conflict and, if necessary, being 'quite hard', survived longer than those who said they were 'very sensitive' and tried to avoid conflict. Possibly, the content of these questions has helped to get the right answer: we can imagine that women who view themselves as original and independant, likely dare to present themselves as such. On the contrary, women who view themselves as 'usual, as the others', likely will state that they are like this. Therefore the nature of these questions may have helped to surpass disturbing effects of social desirability, façade and repression. This may have contributed to these fascinating differences in nature, and their effects on survival, becoming clear.

Viewing oneself as original, independant and special may reflect an inner state with more 'degrees of freedom', possibly due to more access to different aspects of oneself (see psychodynamics in oncology), including more hostile aspects if necessary. Stavraky [16] saw a similar relation already in 1968, when he observed longer survival in patients with various types of cancer, characterised by high hostiliy without loss of control. Shorter survival was related to reserved personality [17].

Survival in breast cancer related to elevations of measures of anxiety and alienation and higher levels of dysphoric mood. Derogatis et al, JAMA, 1979

In line with this, Derogatis [18] saw shorter survival in women with breast cancer with low hostility, and who, overall, were less 'symptomatic' in a psychological sense. Related to this is the observation by Renneker [19], a psychotherapist who worked with cancer patients: "The first aim of a cancer patient is to please someone else; the second aim is not to displease someone else".

Survival in melanoma related to adjustment to diagnosis. Rogentine et al., Psychosomatic Medicine, 1979
In the same year, Rogentine et al. had seen an identical psychological picture in melanoma patients. Patients who seemed to be in no distress after their diagnosis, who seemed to adjust very well, showing no signs of psychological distress, had 20 % 1 year survival; that means that four out of five had died one year later. On the contrary, psychologically symptomatic patients, showing distress following diagnosis and difficulty in adjusting to it, had better survival: three out of four patients were alive after the first year [20].

In hospitals, psychological support is frequently offered to symptomatic patients: those showing anxiety and depression. From the the studies as shown, it is clear that one migth better do the reverse: offer counseling to those that seem undistressed and who, according to their doctor, seem to cope so nicely.

Another concept that got much attention is fighting spirit: an active attitude, directed at 'fighting the disease', from a hopeful and optimistic point of view. Initially, Greer et al. [21] and Pettingale et. al. [22] had seen longer survival in women with breast cancer and high fighting spirit. However, Dean and Surtees [23] could not replicate this finding regarding fighting spirit. Interestingly: they did confirm the protective effect of denial; from a psychotherapeutic point of view possibly a counter-intuitive finding, yet valuable and intriguing. It is important to keep in mind that denial and repression are two different things. Denial helps to keep stressful information outside, repression pushes an already present negative state below the surface of awareness into unconscious realms; like locking the cat in the basement.

The negative finding with regard to fighting spirit is one of those examples in psycho-oncology, where negative and positive observations led to further questions and insight. Greer postulated that apart from true fighting spirit, patients could also exhibit 'pseudo' fighting spirit: patients who say they will do everything to survive, but who do so, not from an inner autonomy, will and 'positive outcome expectancy state' (Ursin's nice definition of good coping), but rather because of some feeling that one is supposed to do whatever one can, either from a moral stance, or to please familiy, friends, or even medical doctors; maybe even because of hopeleness.

Longer survival in leukemia patients related to fighting spirit. Tschuschke et al., 2001, J. of Psychosomatic research

With regard to fighting spirit, Tschuschke et al.[24] assessed fighting spirit by means of interviews and more extensive quantitative and qualitative analysis. Fighting spirit was considered present, when they observed the intention to conquer the disease and not let fate ruling life, and when there was optimism, hope, taking initiative and encouraging oneself by looking back at earlier crises in life that were overcome. Assessed this way, fighting spirit again was related to longer survival.

Relevant is the observation of Schoen [25] He asked a group of seriously ill patients, including cancerpatients, if they were willing to get better. Nearly all did. Then he applied mild hypnosis and asked again, while patients used their hands to answer. Nearly 40 % of the patients now indicated that they did not want to get better at all. At this, more unconscious level, they either perceived the disease a a justified punishment for things that had gone wrong in their life, or as a way out of problematic life-situations that were perceived as insolvable.

Effects of Psychotherapy on Cancer

Some studies have suggested effects of psychotherapy on cancer; some have not. Differences in type of therapy and experience of the therapists may account for these differences. In addition, less methodologically rigorous studies (for example, studies lacking a control group or without random assignment to treatment) may make it difficult if not impossible to distinguish the true effects of psychotherapy from the natural course of the disease. Effects on cancer have been seen from experiential and existential interventions and from training in active coping. To further develop interventions, it seems wise to look at studies in which a change in the course of cancer was observed in more detail, and to compare them with negative studies. The nature of the subject and the complexities of psycho-oncology may further elucidate why some interventions are more promising than others. This, also, may foster our insights and help further development. Ultimately, any psychotherapeutic intervention must be tested against a control or comparison group, which may consist of no treatment, standard intervention, or an intervention that has already been shown to have efficacy.

Slowing of renal cell carcinoma during and after psychotherapy; De Vries et al., Psycho-Oncology, 1997
De Vries et al. [6] observed in five out of 35 patients a halting in tumorgrowth during three to nine months, in one case even two years, following individual and group psychotherapy. The counseling program was based on the experiential (Coughlan and Klein, 1984) and the existential psychotherapeutic approach (Yalom and Greaves, 1977), was influenced by findings in patients with spontaneous remission of cancer, and was directed at increasing autonomy, social support and meaning in life.

Central to the experiential approach is focussing on feelings, needs, aims and potentials of the person. This helps the person to engage in his or her experiential process, thus restoring and perpetuating the continuous flow and actualization of experience. This may help the patient to become aware of incongruities between cognitive and behavioral schemata and his or her actual feelings and needs, and to restore congruence. This approach also emphasizes the need to discover his or her own unique outlook on life and make choices accordingly. Central to the existential approach is the development of an honest, realistic and personal attitude towards one’s life situation, including both what is happening now and how one chooses to live one’s life in the future. Confrontation with one’s mortality and fear of death is inherent in this approach, which may lead to enrichment of one’s existence and experience of meaning in life. Another major theme in the group program was the promotion of group cohesion, which will counter social isolation. In his "letters to George", [26] De Vries wrote about this counseling: "Through the years of working with people with cancer, as a scientist as well as a counseler, I began to see that many, if not all of them, carry a wounded child, deeply buried within. It is my conviction that this abused child is at the root of the type C behavior pattern, found to be so common among those who fall victim to this devastating illness. The primal message these children have received at an early age, in one of many varieties, boils down to: you haven’t got the right to live and be here."

Spiegel, The Lancet,1989

Spiegel et al. [27] studied expressive and supportive grouptherapy in breast cancer patients. These groups had been initiated by Yalom and Greaves, back in the seventies. Therapists had to join these groups for several months before they were allowed to work as group-leaders. The study was not done to find out if there was an effect on survival, but when later survival was looked at, it turned out that the therapy group had lived twice as long as those that dit not have group psychotherapy.

Goodwin et al. [28] and Kissane et al.[29] good not replicate these findings. Their therapists had only a two day training by Spiegel and they used the therapy manual. Maybe this accounts for the difference. Spiegel and collegues had stressed the necessity of therapists joining the groups for several months before leading them, long before they reported the longer survival.

Longer survival in gastrointestinal cancer after psychotherapeutic support. Kuchler et al., J Clin Oncol, 2007

Kuchler et al. [30] gave individual psychotherapeutic counseling to patients with gastro-intestinal cancers, in the days before and after their surgery. Anxiety and depression were explored, as well as coping with the diagnosis. With their personal therapist, patients looked how they had coped earlier in their life with threatening situations. The therapists provided ongoing emotional and cognitive support to foster “fighting spirit” and to diminish hope- and helplessness. Also, patient and therapist investigated how the patient could increase social support. Emphasis was placed on assisting the patient in forming questions for the other caregivers. While maintaining appropriate confidentiality, the patient’s overall well-being was routinely discussed with the surgical team. More than 95% of inpatient interventions took place on the ward, and the remainder at other places within the hospital. Before discharge, the therapist explored the patient’s emotional and cognitive interpretation of the surgery, and assisted the patient in planning for the future. Longer survival was seen amongst the patients that received this bed-side psychotherapeutic support; the therapy effect remained for many years.

It is of great interest that the gain in survival holds on for so long. And for a relatively cheap intervention of less than an average of four hours of patient-therapist contact. As Andrykowski stated in the editorial of the Journal of Clinical Oncology: "I know of no medical intervention that could be implemented with gastrointestinal cancer patients that would be expected to deliver this big a bang for so few bucks."

Overall, experiential, existential, supportive therapies, directed at autonomy, feeling and expressing, supportive relationships, meaning and active coping seem promising, notably when they are performed by therapists who are experienced in working with cancerpatients. Interestingly, cognitive behavioral intervention (CBT), directed at 'restructuring maladaptive thought', sofar has not shown effects on survival. Edelman et al. (1999), give an interesting example of one of their interventions. This may shed some light on our theme. A woman with breast cancer came home after hospital visit. The husband had not accompanied her, nor was he waiting for her when she came home. He showed no interest in what had happened. In the therapy-group the patient expressed her distress; she felt that he did not love her. In experiential therapy, the therapist likely would have explored this feeling. Maybe it is for the first time in her marriage -or life- that the patient is daring to experience the painful possibility that she is not loved. Awareness of this possibility, if it is correct, at least may bring congruence between emotions, cognitions and behaviour, thus lowering repression. Possibly, it might bring some improvement of the relation as well. Yet, in the cognitive therapy, the therapist tried to 'correct the maladaptive thought' of the patient, trying to convince her that this behaviour of the husband not necessarily implied that he did not love her. In the early nineties, Wilhelmsen et al. (1990; one of the 'alieni' being Holger Ursin) reported that they had had to interrupt their study with cognitive psychotherapy for patients with duodenal ulcers because of increased relapse in the treatment group. This was just before the era of protonpump inhibitors. Although not about cancer, this study points to a physically harmful effect of CBT. However, CBT interventions have received rigorous study in many other medical conditions with no evidence of adverse outcomes.

Longer survival in melanoma after a course in problem focused coping. Fawzy et al., Arch Gen Psychiat,1993

Fawzy et al. gave a course, aimed at improving active coping, to patients with melanoma. This intervention only consisted of six weekly meetings of 1,5 hour each. Yet, a substantial effect on survival was seen. In their later analysis (2003) it turned out that the effect on survival of this short intervention lasted up to ten years [31].

Looking at their data in more detail, Fawzy et al observed that the effect on survival was most clear in patients that had developed active coping. Thus they stated: "If coping improves, so does survival".

Guidelines for Coping with Cancer *[32].

1.Do not believe the old adage "cancer equals death." Today many cancers are curable; others can be controlled for long periods, during which new treatments may become available.

2.Do not believe that you caused your cancer. Although some studies have linked specific personalities, emotional states or painful life events to the development or course of cancer, this does not constitute psychological characteristics that one can be held responsible for. Severe psychological, existential or spiritual wounds do occurr, with subsequent effects on coping, expressivity, relationships and experiences. Feelings of shame and guilt may be related to these, should be acknowledged and worked through, often to discover, uncover and to support a painfully wounded, innocent inner child; that deserves life; no blame.

3.Do rely on strategies that helped you solve problems in the past, such as gathering information, talking to others and finding ways to feel in control. Seek help if they don't work.

4.Do not feel guilty if you can't keep a "positive" attitude all the time. Low periods will occur, no matter how good you are at coping. There is no evidence that those periods have a negative effect on your health. If they become too frequent or severe, though, seek help. Interestingly, large fluctuations in mood following diagnosis, have been observed as part of a positive psychological process. In various studies, psychologically 'symptomatic' patients fared better than those that remained emotionally blank and seemingly un-distressed. As the saying goes: "You pay a price, for being nice".

5.Do use support and self-help groups if they make you feel better. Leave any that make you feel worse.

6.Do not be embarrassed to seek counsel from a mental health professional. It is a sign of strength, not weakness, and it may help you to tolerate your symptoms and treatments better.

7.Do use any methods that aid you in gaining control over your emotions, such as meditation and relaxation. However, don't just use them as a trick to 'emotion focused coping'. Real life issues may ask for an active attitude, expressive and problem solving behaviour.

8.Do find a doctor of whom you can ask questions and with whom you feel mutual respect and trust. Insist on being a partner with him or her in your treatment. Ask what side effects you may expect and be prepared for them. Anticipating problems often makes them easier to handle when they occur.

9.Do not keep your worries a secret from the person closest to you. Ask this person to accompany you to visits to the doctor when treatments are to be discussed. Research shows that you often don't hear or absorb information when you are very anxious; a second person will help you to interpret what was said.

10.Do reexplore spiritual and religious beliefs and practices that may have helped you in the past. They may comfort you and even help you find meaning in the experience of illness.

11. Do not abandon your treatment in favor of an alternative method. Discuss the benefits and risks of any alternative treatments brought to your attention with someone you trust who can assess them more objectively.

References

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