Johannes Nicolaas Schilder*

Introduction into Psycho-oncology Psychological care for patients with cancer has two important functions. Psychological factors may influence the course of cancer and the length of survival. This is the psycho-biological, psycho-physiological or psycho-medical aspect of psycho-oncology. Also, when psychological care may not have any influence on length of survival, it still helps a patient to cope with his disease and to organise his life in best possible ways. This is the quality of life aspect of psycho-medical care. To appreciate the value of psycho-medical care and to have some insight in themes and issues that are relevant in the care of people with cancer, it helps to know something of studies about the relationship between psychological factors and onset and course of cancer. This knowledge is helpful for professionals and patients alike. One needs to know what sort of processes, past experiences and ways of coping may go on behind a patient’s face on a ward, at the out-patients clinic or at home. Repression, whether premorbid or as a result of the confrontation with diagnosis and prognosis, complicates research and counselling. Some notion of what may go on inside a patient, helps to explore relevant themes and issues. Despite it’s long history, research in psycho-oncology is still ‘work in progress’. Nearly twothousand years ago Galen noted that melancholic women seemed to be especially prone to develop breastcancer. Later on, Guy noted in 1759 (quoted by Bastiaans, 1985) that a melancholic attitude, ‘hysteric complaints’ and traumatic experiences preceded cancer. Gendron (1901) pointed to a role for depression and anxiety. Groddeck (quoted by Van Meerloo, 1954) writes in 1934 that cancer is caused by “a displayed embryo formation on the basis of deeply repressed motherhood”. Whether this may be a useful approach remains to be seen. Yet, in my study on psychological factors preceding spontaneous regression of cancer (Schilder, 1996), one of the patients developed ovarian carcinoma nine months after she had discovered that her sister had slept with her husband. She literally stated: “I came down with cancer, while she had his baby”. Surely this may remind us of ‘displaced embryo formation’. After World War II the study of psycho-oncology became a field of it’s own. Three areas of research are distinguished: A- Psychological factors and the onset of cancer. B- Psychological factors and the course of cancer. C- Effects of psychotherapy on the course of cancer. Cancer is a multifactorial disease. Genetic factors, age, environmental and psychosocial factors can be involved. Some cancers have a strong genetic component; f.e. cancers in people that carry the BRCA gene. Other cancers are provoked by exposition to substances, like tobacco smoke or asbestos. In other patients a psychosocial factor possibly dominates. It is important to bear in mind that even in cancers that are caused by a specific agent, other *

Johannes N. Schilder, MD, PhD, Psychodramatherapist NVGP; Practice for Psychomedical Help, Kerkstraat 7, 8521 JV St. Nicolaasga, The Netherlands. Phone 31 6 53586287. websites www.psycho-oncologie.nl (Dutch) and www.thedutchdoctor.nl (English) Email is the word: psychomedisch followed by: @gmail.com

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factors still are involved in the onset and the course of the disease. Not all smokers develop carcinomas; not all BRCA carriers do develop carcinomas and not all cancers in BRCA carriers show up at the same age. Later we will look at the phenomenon of Spontaneous Regression of Cancer (SRC). As we will see, such regression may also occur in mesothelioma. Mesothelioma is evidently caused by asbestos-exposure, but in the course of the disease apparently different factors play a role, sometimes a decisive one.

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A- Psychological factors and the onset of cancer We will now have a short look at several studies. Different researchers have studied different psychological factors .To make things even more complicated, they have also used different methods and techniques. Therefore it is not easy to make a simple piece of text that describes the area of psycho-oncology. The most useful way may be to look over the various studies themselves. In doing so (‘intelligent aggregation’) each of us will gradually develop a basic understanding of major themes and issues in psycho-oncology. In 1946 and 1947 Thomas et al. (1979) studied ‘closeness to parents’ in a group of healthy male medical students. Twenty years later they observed that persons that had been less close to their parents, had developed significantly more cancers (figure 1).

Figure 1. (Thomas et al., 1979; © Psychosomatic Medicine). A lower score on closeness to parents involved twice less good relationships between parent and sun and five times more bad relationships. A shortcoming of this study was that there was more smoking in de cancer group than in the control group. Interestingly, closeness to parents in the groups that later on developed cancer, was just a poor as in the group of persons that later had committed suicide or had developed mental illness. This brings into our attention an old notion in psychology that existential pain may be expressed psychologically (mental illness, even suicide) or physically, like cancer. LeShan (1996, 1989) pointed at the role of ‘silent despair’ or, quoting Worden, of “a foiled creative fire” in the onset of cancer. With the help of projective tests, like the Rorschach test and the Rorschach Interaction Scale (RISP), unconscious attitudes had also been assessed. The Rorschach test is a somewhat oldfashioned instrument. People are given ink-blots and they tell the researcher what they see. Table 1 gives some examples and shows how a specific answer is rated. So, if someone sees “a young couple kissing” in the undetermined ink-blot, than this is rated as “+5, Warm, affectionate; Close, intimate”. Another person, confronted with the same ink-blot, may see something completely different, f.e. “two animals fighting to tear apart another animal”. This is rated “–5, Extreme feelings of aggression, violence” etc. The value of this test is that it

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may reveal repressed states and emotions. So it may show a somewhat deeper level of a person, than the level which is encountered in everyday life.

Table 1. Examples from the Rorschach Interaction Scale (Graves et al. 1986, © Psychosomatic Medicine).

According to their scores students had been classified into five groups: - “Bland / Normal”: all scores average (N = 251). - “Healthy / Sensitive”: good relationships with father/ mother, usual positive interactions as well as an anxiety reaction under stress (N = 204). - “Acting out / emotional”: high scores on parental control and depression, anxiety and extraversion under stress (N = 151). - “Loner, lacking in expected interests”: poor score on RISP, poor relationship with father and mother and poor curiosity (N = 147). - “Interpersonal conflicts”: high scores on negative interactions and potentially negative and positive interactions (N = 219). Thirty years later higher mortality caused by cancer was observed in groups that had been classified “Loners’ and “Bland / Normal” (more than 10% dead in thirty years), less mortality in those labeled as “Healthy / Sensitive” hardly any people had died that had been classified as “Acting Out / Emotional” (1 % in thirty years; figure 2).

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Figure 2. Cancer mortality and types of social interaction (Shaffer et al., 1987; ©Journal of Behavioural Medicine). Overall this study suggests a protective effect of expression of emotions and good social relationships, while emotional under-expression and lonership seem quite harmful. For those of us not familiar with the words suppression and repression: Suppression means a conscious effort to suppress an emotion. So, one may feel angry, but decides to behave calm or even friendly. Morris et al. (1981) quote St. John (1949): “A lady is –or in Ellen Terry’s generation was- a person trained to the utmost attainable degree in the art and habit of concealing her feelings and maintaining an imperturbable composure under the most trying circumstances”. This is suppression. Repression involves unconscious non-expression. Then, an emotion is not felt at all. It may even be that consciously the opposite feeling is present, while under hypnosis, in a dream or in an experiential exercise the ‘true’ feeling manifests. The manifest emotion, used to repress another one, is called a ‘racket’ feeling in psychodrama. These are important one to tackle, because otherwise, a researcher or therapist may easily believe that he had ‘deep and emotional’contact with the patient, wile actually they have only been involved (or got lost) in the cover up. Graves et al. explored the above mentioned data even further. They not only took in account absolute scores, but they paid attention to ambivalent scores as well. They divided the group of students in five categories: - “Flexible”: a well adjusted, flexible attitude in relationships, with affective as well as aggressive feelings, without each of them going into extremes. This group had RIS scores from –4 till +4 (N = 214). - “Conformist”: well adjusted in relationships with others, avoiding extremes; two-thirds of RIS scores between +1 tot +3 (N = 292). - “Emphatic Positive”: a person emphasising harmonious, positive relationships, including very affective, warm feelings; RIS scores 0 to +5, with at least some +4 and +5 (N = 120).

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“Controlled”: an emotionally restricted, reserved attitude toward others, with scores between –3 en +3 (N = 203). - “Ambivalent”: an unbalanced attitude with poorly controlled extremes in both destructive, hostile and violent behaviour, as well as extremely affectionate and intimate behaviour; scores between –5 en +5 (N = 162). - “ Avoidant”: a distant or withdrawn attitude. In this group also those students whose answers could not be scored (N= 36). The cumulative proportion of people with cancer in the various groups after 35 years is shown in figure 3.

Figure 3. (Graves et al., 1986; ©Psychosomatic Medicine). Not unexpectedly, unbalanced interactions were related to absence of closeness to parents. We will deal with the role of early life-experiences later on. Dattore et al. (1980) looked at MMPI questionnaire results, that had been collected in 75 persons that later on had been diagnosed cancer. They compared the test-results in these persons with those of 125 persons that remained cancer free. People that later had been diagnosed cancer, had higher scores on both repression and depression. They scored lower on ‘denial of hysteria’, which suggested that there was more self-insight and introspection and somewhat less strict moral attitude. Persky at al. (1987) also used MMPI data, but over a much longer period, up to twenty years, in a much larger group of 2018 persons. Absolute scores for depression did not predict cancer, nor did scores on repression as such, but a relatively high score on depression, compared with

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scores on other emotions, showed a double risk for developing cancer. This is an interesting observation, as it showed that, overall, cancer patients were less emotionally expressive. Reynolds and Kaplan (1990) looked at social relationships and cancer and cancer mortality in a group of 6848 persons. They assessed civil status, numbers of contacts with friends and family and attitudes in relationships. People were given these 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. Those persons that agreed with two or more sentences were classified ‘feeling isolated’. Over a period of seventeen years socially isolated persons died more of cancer. This effect was especially strong in men: severely isolated men having a relative risk (RR) of 3,43, compared with least isolated men. Actually this means that out of seven men dying from cancer, five have been severely isolated persons. So, addressing the subject of social isolation is a wise thing to do on a ward or out-patient department.

Conclusion of prospective studies Prospective studies show a relationship between depression, possibly repression, emotional non-expression (because of repression or suppression), loneliness and poor attitude in relationships, and development of cancer. The relationships can be strong and become more visible over a longer period of time. It seems that projective tests, pointing at unconscious levels, show the strongest relationships. Analytical studies LeShan (1966) subjected 450 cancer patients to a projective test (the Wortington Personal History test). 150 Patients were interviewed. The interviews, on average, lasted 4 hours. 45 Patients were seen in psychotherapy for a total of 5000 hours. On the basis of this material, LeShan gives the following ‘blueprint’ of a cancer patient. Quote LeShan, 1966: “Early in life, apparently during the first seven years, damage was done to the child’s developing ability to relate. Often this was accentuated by a physical event, such as the loss of a parent, the death of a sibling or something of this sort. From his experience at this time, the child learned to feel that emotional relationships brought pain and desertion. Loneliness was his doom. In the usual manner of children, this was attributed to some fault of his own rather than to the result of accidental forces. Guilt and self-condemnation were the inevitable response. The traumatic situation or crisis had not the kind of timing and intensity which would be likely to produce obvious neurotic symptoms or to prepare the individual for psychosis in the event of later stress. From a surface viewpoint, he managed to adjust adequately to his environment. However, the orientation that social relationships were dangerous and that there was something very much wrong with him, persisted and coloured his life. Little real energy was invested in relationships. His cathexes to other people were essentially superficial and no matter what he achieved, his basic feelings of failure predominated. To use Kierkegaard’s phrase, he was in “in despair of himself”. Usually others saw them as “good, “decent”,“ benign” people who used very little aggression in expressing or defending their own wishes. Sometime in his development, usually in our cases in late adolescence or early adulthood, a situation arose that offered an opportunity for relating to others; a perceived chance to end the deep loneliness he felt. This possibility seemed somehow “safe”. Over a period of time, a period of slow and cautious experimentation, he

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began to pour his energies into this channel. The feelings of isolation and “lostness”, the deep loneliness were greatly, but never completely, eased by this relationship. A tremendous amount of psychic and usually physical energy was poured into it. The cathexis gave a meaning to life. For a period of one year ranging to over forty, they had a meaningful existence and a channel into which to pour their energy. Sometimes it was a job with a role for which they seemed particularly well adapted and which they enjoyed. Sometimes, as a spouse, a parent or both, they found a way of life that brought them closer to satisfaction and relatedness than they had ever dreamed was possible. They still found it difficult to express or defend their own wishes, but in the interest of their group or of the relationship, they could act very strongly. For a shorter or longer period, life continued on this plane. Then the blow fell. Circumstances brought an end to the relationship; their role was lost. Job retirement was forced on them, a spouse died, children grew up, became independent and no longer needed them. The immediate reaction varies. Some made desperate efforts to find substitute relationships. They tried to obtain new jobs, to find a new group, only to fail. Others were crushed by the blow. From a superficial view, all continued to “adjust”. They continued to function and went about their daily business, but there was no more meaning and hope to their lives –utter isolation and rejections- was now their eternal doom. The only way out was to cease existing. “Half in love with easeful death I cry” seemed to express their feelings. Although they feared death, they did not want to live†. The early fantasy of something being basically wrong with them, something that made them unacceptable to others, returned in full force. Their energy level declined, because now there was no meaningful channel for its expression, and the decline was soon felt. The colour and zest went out of life. At some time from six months to eight years after the crucial cathexis was lost, the first symptoms of cancer appeared in the cases we observed. This was the basic pattern found. It appeared in 72 percent of the cancer cases and 10 percent of the controls. It was also seen in 42 of the 45 cancer therapy cases and in one of the 30 control therapy cases. (end quote LeShan). LeShan suggests that “despair” is the hallmark of these patients’ life-histories. Projective test and even in-depth interviews often failed to show this characteristic, but is was apparent in 43 of the 45 patients that were seen in psychotherapy. Quote (LeShan, 1966): “The depth and intensity of this orientation is so great that it is difficult to describe. Basically, it is a bleak hopelessness about ever achieving any real feelings of meaning or enjoyment in life. The person feels condemned to make tremendous efforts to find meaningful relationships and roles which will enable him to share the zest, the enthusiasm, the feeling of belonging that he senses in others, but deeply believes that these efforts will ultimately fail. There will be only the struggle without the rewards. There is a complete loss of faith in the ability of outside objects to bring



Schoen (1993) studied people with various diseases, including cancer. Nearly all patients indicated that they wanted to recover. Under light hypnosis, however, 40% of the patients indicated that they were unwilling to recover. Some patients felt guilty and they experienced their illness as a deserved punishment. Others experienced seemingly onsolvable problems in their life and the disease was experienced as a way out of these situations. Patients were amnestic for what they had indicated while under hypnosis and they were shocked when they heard about there unconscious resistance to health.

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any meaningful rewards and a loss of faith in his own development ever bringing him to a stage where he will feel less cut off”. (end quote LeShan). Kissen (1967) interviewed 128 men with lungcancer and 148 men with other lung-diseases. The interviews had been done before the patient was informed about his diagnosis. In lungcancer patients. Kissen observed early loss of a parent (prior to age 15) and unhappy home twice more often than in the group of non-cancer patients. Emotional nonexpressiveness was also seen: upsetting items were reported as factual events, not as disturbing or upsetting. The emotionally upsetting or disturbing aspect of the reported events were only revealed after extensive in-depth interviewing. Bahnson and Bahnson used the classical concepts of psycho-analysis: repression and projection. Quote Bahnson en Bahnson, 1969): “Secondary repression refers to a continual defense process that successfully prevents the conflictual impulse from ever discharging in ideational or behavioral forms. Thus, according to our conceptual framework, a person who utilizes repression blocks any behavioral or cognitive outlet of the disturbing impulse; rather he must cope with the drive, not psychologically, but somatically, through internal discharge systems” (end of quote) Thirty cancer patients and 64 controls were given projective tests. Cancer patients experienced their environment as clean, friendly, peaceful, pure en reliable, much more so than other persons and patients with other, serious disease. These cancer patients seemed to deny negative aspects of the world around them. Compared with patients with heart disease they differed especially in repression of hostility and of matters concerning dominance and subversiveness. Kneier and Temoshok (1984) applied a more sophisticated design. They measured the extent to which patients reported stressful feelings. Also, they measured skinconductivity, a physical measure of stress: stress-induced sweating increases skinconductivity. Repression is present if a person reports no feelings of stress, while at the same time skin-conductivity goes up. Thus, it was found that melanoma patients exhibited more repression than patients with cardiovascular disease. Conclusion Cancer patients may be in existential pain long before the onset of their disease. Repression and a façade of happiness seem to be more present and may be a result of the diagnosis or a pre-morbid condition. In working with patients with cancer, health workers need to be aware of this non-expressiveness, as it is likely to result in underreporting of negative feelings or other negative aspects of life in or outside the hospital.

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B- Psychological factors and the course of cancer Pettingale and collegues (1985) interviewed 69 breast cancer patients three months after diagnosis. They found four types of reaction: - Fighting spirit: a highly optimistic attitude, accompanies by a search for greater information about reast cancer. They planned to do everything in their power to “conquer” cancer. - Denial: apparent active rejection of any evidence about their diagnosis. Such a patient might say: “It wasn’t serious, they just took my breast off as a precaution”. - Stoic acceptance: Acknowledgement of the diagnosis without inquiry for further information unless new symptoms developed. A statement could be: “I know what it is, I know it’s cancer, but I h’ve just got to carry on normal life”. - Feelings of helplessness/ hopelessness. Complete engulfment by knowledge by knowledge of the diagnosis. They were devoid of hope: “There’s nothing they can do, I’m finished”. Over a period of thirteen years large difference were seen in survival, related to psychological state (figure 4).

Figure 4. Survival of breast cancer patients, according to psychological response (Pettingale et al., 1985; ©The Lancet).

In a similar design Dean and Surtees interviewed 121 women with breast cancer. These authors again observed a relationship between denial and long survival, as well as a relationship between stoic acceptance, helplessness/hopelessness and short survival. However, in this study ‘fighting spirit’ was related to short survival (figure 5).

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Figure 5. Survival of breast cancer patients according to pre-operative, psychological response to diagnosis (Dean en Surtees, 1989; © Journal of Psychosomatic research)

Similarly, in a study with patients suffering from leukaemia, Andrykowski (1994), using questionnaires, did not find a beneficial effect of ‘fighting spirit’ either. Tschuske et al. (2001), also studying leukaemia patients, did find longer survival in patients with fighting spirit. Their approach differed: they asked patients to tell about themselves and their lives after the diagnosis. Later on they scored how long patients had actually been speaking about various topics, like not complying with fate, taking initiative, optimism, thinking back of earlier situations that they had survived by taking control etc. The time spent to each topic was compared with the total time spent in the interview. Thus a measure was a obtained of high vs. low fighting spirit. Figure 6 shows the relationship with survival.

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Figure 6. Survival of 52 leukaemia patients after allogenic bone marrow transplantation, according to high vs low fighting spirit. (Tschuschke et al., 2001, © Journal of Psychosomatic Research).

Overall, fighting spirit may be a favourable prognostic sign, yet findings are not conclusive. There seem to be two problems. One is that different researchers have used different definitions; Dean and Surtees have mentioned this problem in their paper. A more important problem has been addressed by Greer. It is difficult to differentiate between ‘true’ and ‘pseudo’ fighting spirit. Some people may actually not believe that they have any chance at all, yet they want to help their families not to lose hope and therefore they act in a seemingly convincing way as if they are doing everything that’s available to recover and they pretend to believe in a successful outcome. Actually, the patient thus tries to bear the family’s burden, next to the burden he has himself already. Also, he may feel obliged to ‘do everything he can’ in order not to dissatisfy the efforts by family, friends or health care workers. Also, he may feel that it is a moral obligation to do everything possible to get well again. All of this still could be a conscious effort. Next to that, we are reminded of the observations of Schoen, mentioned before, that many patients may consciously believe that they are willing to recover –and act accordingly- while in fact they do not want to recover at all. All of this complicates the area and needs to make us careful in assessing the patients state of mind and his ideas about treatment and his hopes. The second interesting outcome of these studies is the role of denial. Apparently, denial may be a healthy way to protect oneself against the impact of such a severe diagnosis like cancer. This an important finding. In the context of modern care, psychological help and psychotherapy, and in the context of Bulgaria moving towards European standards, we tend to believe that people should be fully aware of the situation they are in. Yet, if people apparently deny some aspects of that reality, we need to respect this. This does not mean that one should 12

not inform a patient. In various countries, like Bulgaria or Japan, it is still common not to inform a patient if cancer is diagnosed, but only to inform the family. This does not seem wise. The family is left with a secret that stands between them and the patient. Also, the patient’s autonomy has been harmed: he knows less than the persons around him. Yet, he may become aware of subtle changes in people’s attitudes around him, which may lead to feelings of insecurity and distrust. Also, in modern European law, it is forbidden to inform persons other than the patient about his medical situation, without explicit permission by the patient to do so. In case the patient denies the message that was told to him, the situation is quiet different. Somewhere in there, the patient may well know the diagnosis, but unconsciously he is in charge which information is allowed into conscious experience and which is not or not yet. So, his autonomy is preserved and no communicational barriers between the patients and his family have to ensue. Dean and Surtees did one more interesting observation. They observed that presence of anxiety and depression prior to surgery was a prognostic good sign (figure 7).

Figure 7. Survival of breast cancer patients according to presence of depression and anxiety prior to surgery (Dean en Surtees, 1989; © Journal of Psychosomatic Research). Although counterintuitive on first sight, this observation is in line with a previous report by Derogatis et al. (1979). Derogatis et al., in a study of 35 breast cancer patients, observed shorter survival in women with metastatic breast cancer that scored low on hostility and high on positive mood. Long term survivors were more symptomatic (psychologically) and according to their physicians, ‘poorer adjusted’ than short-term survivors. On the other hand, Dean and Surtees confirmed Pettingale at al’s finding of short survival in patients that were helpless/hopeless three months after surgery. Gilbar et al.(1995) interviewed 40 breast cancer patients two weeks post-surgery. During 8 years follow-up, more metastases and short survival were seen in women that had been high on anxiety and hostility two weeks post-surgery. How to interpret these various findings? Two aspects seem important: psychological dynamics and repression.

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Dynamics means that patients may go through a process. Apparently, those patients that experienced and expressed their emotions pre-operatively, had better outcomes psychologically three months later and subsequently they had better survival. Quoting Dean en Surtees, 1989): “Several authors have suggested that unexpressed distress may take its biological toll; this may be the explanation why women who had a lot of psychiatric symptoms just after they had been told their diagnosis, had a better chance of disease-free survival. The expression of distress at the time of diagnosis can be seen as an adaptive response (analogous to a normal grief reaction) in that it evokes a response from the patient’s environment in terms of social support (--) Women who had persistent psychiatric symptoms (analogous to an abnormal or delayed grief reaction) and were classified as a case at three months after operation did not have a better prognosis.” (end of quote). The other important aspect is repression. Jensen (1987) used the Marlow Crowne social desirability scale and Taylor Manifest Axiety scale in 52 breast cancer patient. 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: Quote Jensen, 1987) : “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. 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. To show the ful complexity of the subject, it is useful to lok at the study by Leigh et al. (1987) They measured depression in patients with several types of cancer with the so-called Beck depression Inventory, a questionnaire. They divided the group in two parts: a group of short survivors and a group of long survivors. Only within the group of short survivors, they observed that individuals with high depression had the shortest survival. In the whole study population, though, high anxiety was related to long survival. Leigh et al. suggest that “patients with higher anxiety and depression level in de non-survivor group had a massive defensive failure, while those who had high anxiety levels and survived more than 3 years had been more realistic about their disease”. Apart from the influence of repression and the collapse of repression (‘massive defensive failure’), the measurement device may influence the results. Possibly questionnaires in some instances may be less sensitive than interviews. Watson et al. (1999) developed the Mental Adjustment to Cancer scale (MAC scale), using the findings by Pettingale and Greer as mentioned previously. Using the MAC scale in a group of 578 women with breast cancer, they, again, observed shorter survival in patients

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with helplessness/ hopelessness, but the differences were much smaller than in the interview-based study by Pettingale and Greer. Richardson et al. (1990) observed no results with various questionnaires (the Zung Depression Scale, Health Locus of Control scale, Moos Coping scale) nor, in their study and the one by Cassileth (1995), the Beck Depression score. We are reminded here of the complexities with regard to the BDI in the above mentioned study by Leigh et al. Other researchers had no results with the Zurich en Freiburg Coping scales (Budderberg et al., 1991). Ambivalent results were obtained with the Symptom Check List (SCL-90R). Rogentine et al (1979) found no relationships with scores and course of disease, while, as mentioned before, Derogatis et al. (1979) observed shorter survival in relation to lower hostility scores. Levy et al. (1988) used a different measurement: the Affect Balance Scale (ABS) and observed longer survival in breast cancer patients that had higher scores on happiness (“glad, cheerful, joyous”), while shorter survival was seen in patients that previously had been more “sad, hopeless, worthless, miserable, unhappy and hostile”. Possibly some questions by their nature may increase the chance that a reliable answer is given. Forsén and Luoma (1992) asked 96 breastcancer patient, still at the ward shortly after their surgery, if they considered themselves “Original, independant, special” vs. “Usual, as the others”. In the years that followed it turned out that those patients that had rated themselves as “Original, independent, special” had a much longer survival than those that had considered themselves “Usual, as the others” (figure 8).

Figure 8: Survival in breast cancer in relation to being “Original, independant, special” vs. “Usual, as the others”. (© Forsén en Luoma, 1992). Also, much longer survival was seen women that had rated themselves “Quite hard” in social situations, than in women that had judged themselves as “very sensitive” and trying to avoid conflict (figure 9).

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Figure 9: Survival in breast cancer in relation to being “Quite hard” vs. “Very sensitive”. (© Forsén en Luoma, 1992). Interestingly, the answers to these questions may in some way have reinforced themselves: someone who considers herself original and special may well be daring to say so, while someone who considers herself ‘as the others’ may well do whatever she can to present herself as such. May this has contributed to accurate answers and to the large differences that thus could be seen. Again the theme of hostility comes back here. Apart from Derogatis and Jensen, mentioned before, Stavraky in an earlier study (1968) applied a questionnaire (the MMPI) and a projective test to 204 patients with various types of cancer. Longer survival was seen in patients characterised by high hostility without loss of control. Twenty years later Stavraky and others (1988) in a new study with 126 patients with lungcancer, observed higher mortality in patients with - a high need for care, sympathy and dedication. - a more reserved personality as opposed to normal or ‘outgoing’. - extreme soberness or extreme enthusiasm. The odd ratios for these characteristics were respectively 2,9 – 3,9 and 2,8. This means that mortality in patients with a reserved personality was nearly four times higher than in those that were not reserved or even outgoing. Actually, the prognostic value of this psychological factor nearly equalled the effect of metastasised versus local disease. The negative influence of either soberness or extreme enthusiasm possibly may remind us of the negative influence of ambivalence on the onset of cancer in the study by Graves. Naturally, one would expect that there is some similarity between factors that precede the onset of cancer and those that seem to be involved in tumorprogression after diagnosis: before a tumor is manifest and is diagnosed, it had to progress from an invisible stage to macroscopic disease. Social Support In the paragraph on psychological factors and onset of cancer we saw that Shaffer et al. (1987) observed more cancer in patients that previously had been characterised as ‘loners’. With regard to the course of disease Levy et al. (1985, 1987) observed longer survival in patients that more social support. Waxler-Morrison et al. (1991) looked into this in some detail. In a study with 118 women with breastcancer, they observed a dose-dependant relationship between the amount of contacts with friend and mortality. In patients that had a contact with a friend less than once a month, mortality was fourteen times higher than in patients saw a friend daily. Patients with a lot of support said that practical help from friends was most important. Second most important was the possibility to vent emotions. In this study, in contrast with some other studies, married women did worse than unmarried women. In subsequent interviews married women said that sometimes they had tried to pretend as ifthey were not sick at all or they had tried to make an optimistic impression in order to prevent

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distress in family members. I doing so they actually had carried a double burden, without the possibility to share this. Long survivors emphasised that they were in control with regards to their friends, while in family-relationships women had less choice in whom to contact or when to do so. In Holland there is this saying: “you may choose your friends, not your family”. In the end WaxlerMorrison et al quote Nealing and Winefield: “Friends provide less support of every kind than do families yet the reported satisfaction with support is greater than that from family members”.

Psychosocial factors in spontaneous regression of cancer Sometimes malignant tumors regress or disappear spontaneously. This means that there has been partial or complete disappearance of a malignant growth in the absence of all treatment or in the presence of treatment that cannot be considered to exert significant influence on tumor growth (Everson & Cole, 1966). Four previous studies have suggested that, prior to the first signs of clinical improvement, patients who went on to exhibit the spontaneous regression of cancer had shown shifts toward personal autonomy, experiencing purpose in life, and a higher quality of social relationships (Ikemi et al., 1975; Weinstock, 1983; Roud 1986; de Vries, 1986 and Van Baalen et al., 1987). In a Dutch study by Van Baalen and De Vries interviews were carried out with six patients with spontaneous regression of cancer and six patients with progressive cancer. The transcripts of the interviews had been subjected to a group of independent raters. Copies of the transcripts had been examined by an independent investigator for clues, such as indications of spontaneous regression of cancer, pointing to the group to which the patient belonged. Such passages had been removed. The transcripts were subsequently read independently by six raters who had no knowledge of the patients’ history. The main outcome of this study was that patients with spontaneous regression of cancer scored significantly higher than patients with progressive cancer on personal autonomy, behavioral and sensory changes, fluctuations in mood, existential shifts, and social support. The interviews with the patients manifesting a spontaneous regression of cancer demonstrated clearly that, often, quite sudden, psychosocial shifts occurred prior to their knowledge of spontaneous regression of cancer and preceded physical improvement. Experience of autonomy is the sense of having, within limits control over one’s situation, behavior and predicament. Autonomous behavior refers to the person’s expression of this sense into congruent activity. Counterparts are dependency, feeling helpless and complying. Existential shifts were defined, in line with Ikemi et al. (1975), as a more less dramatic psychological change involving one’s outlook on life and appreciation of life. First we will describe two patients from the study by Van Baalen and De Vries (1987).. Br, woman, age 28. History: Aged 18, this patient finished a relationship with someone she deeply loves, for fear that they would end up fighting, like her own parents. Many years of depression and suicidal thoughts, out of the body experiences; academic drop-out; refusal by a new friend to live together. Diagnosis: Inoperable ovarium carcinoma. Pre-regressional period: The patient was given a prognosis of 4 months, or 2 years in case of chemotherapy. She immediately replied: "That 's absurd, what a nonsense". She started tomfoolery with the nurses, was extraverted, angry at times and free from depression. She ordered her friend to buy any book he could find on cancer that might be helpful. She tried chemotherapy for 2 days and decided not to take it. Her friend agreed to their living together. Follow-up: Recurrence after 6 years; debulking surgery, refusal of chemotherapy; in good health for a subsequent period of 8 years. S, boy, age 10. History: The parents previously lost a son, aged 8. 17

Diagnosis: Malignant giant cell tumor in left femur. Pre-regressional period: The parents were confronted with the diagnosis and oncoming amputation in a harsh way. They immediately refused amputation and sought for alternatives, even in a neighbouring country. The mother stated that she didn't want to loose one more child. They were extensively helped by community members. The boy was given any means necessary to express his creativity. Daily visits by friends were warranted. On doctor's orders, his mother gave him daily massages of three quarters of an hour. This continued for more than one year. During ongoing prayer by the village community for nine successive days, the boy's pain disappeared. He gradually improved. Not being able to walk yet, he built himself a cart that he had pulled by the family's dog. He further improved, but his leg remained crooked. Follow-up: 20 Years later, prior to operative correction of the leg, no malignant tissue could be detected. We hypothesized that spontaneous regression of cancer was preceded by a highly confronting situation, in which the negative consequences of the situation 'go beyond the pale' and elicit a shift toward active, problem solving behaviour. With regard to a child (patient S), this process took place in the parents and resulted in enormous care, stimulation and attention from the family and the village community. Seven new patients with SRC were collected by means of three appeals in medical journals. Any case meeting the clinical definition of SRC was included for further analysis, to exclude psychological collection bias. A, woman, age 47. History: Poor marriage, ongoing divorce procedure. The patient was ambivalent between "always swallowing everything" and uncontrolled, destructive rage; 3 incidences of nonHodgkin lymphoma, regularly treated. Diagnosis: Recurrence of Non-Hodgkin lymphomas in neck and abdomen. Leukeran and prednison stopped, due to tumor progression. No further treatment. Pre-regressional period: During a mountain trip, her new friend left her alone in an "unacceptable" manner. Angrily she decided not to wait for his return. Instead she made a risky but successful trip on her own. She "felt her anger dissolve with every step". Her pain had gone. Upon return in the mountain cottage she felt "proud as a peacock". Her abdominal tumor "felt gone". Two days after coming home, her consultant confirmed tumor regression. Follow-up: Recurrence after one year. In trying to make a similar psychological shift to the one she had experienced in the mountains, the patient noticed that she could not 'order her will'. She died one year thereafter. B, woman, age 57. History: Tiring family business; long-standing conflict with brother that had been "eating her away", leaving her feeling guilty and helpless. Diagnosis: Poorly differentiated abdominal adenocarcinoma; no treatment. Pre-regressional period: Though invited, the brother refused to visit her and even made demands before he agreed to come to her oncoming funeral. The patient felt terribly hurt. From that moment she held her brother responsible for the conflict and she no longer felt guilty or helpless about it. The patient's husband and adult children cared for her with great attention. The family business was sold. 1 Month following diagnosis no tumors could be palpated. Follow-up: 8 Months following diagnosis, no tumors detectable on CT-scan. She has been in good health for 4 years.

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C, woman, age 31. History: Hydatiform mole at age 25, treated with chemotherapy; aggressive neighbour, threatening both the patient and her child. Small accommodations in unfinished houseboat. Diagnosis: Choriocarcinoma with lungmetastases. Pre-regressional period: The patient felt frustrated by the ineffectiveness of regular treatment. Only following chemotherapy and lung operation did her consultant decide on hysterectomy, which the patient had proposed on admission. During admission the patient had been "full of repressed anger", according to reports of a psychologist and a nurse. When finally hysterectomy was performed, it proved ineffective (her tumormarker beta-HCG rose again). Now she got angry. She refused further treatment and decided to 'do it on her own'. The tumor-regression began when she carried this out. Also a healer advised her to pray and to forgive her neighbour. They moved the boat to another place. Follow-up: Beta-HCG undetectable after 6 months. She has remained in good health for 4 years. D, man, age 67. History: End to activities, partly due to negative feedback from the patient's wife; "only doing what she wanted". Diagnosis: Poorly differentiated adenocarcinoma in vertebra C7. Pre-regressional period: The patient 'went all out' and displayed an obstinacy, determination and willpower that had been a characteristic of his personality for many prior years. Radiation on his spine was successful, but two months later he had developed a supra-clavicular metastasis, outside the field of radiation. The patient was acknowledged by his consultant for his characteristic way of dealing with his disease. The patient refused biopsy of abnormalities in his lungs. Subsequently the metastasis regressed without treatment. Follow-up: In a month when he was again doing a lot of things that he actually did not like but that his wife really wanted, he suffered a recurrence in his vertebrae. The metastasis did not return. He died one year later. E, man, age 66. History: This patient had been taking care of his wife and an unmarried son for years. About one year prior to his diagnosis she had died. Diagnosis: Multiple sites of an undifferentiated malignancy in the liver (carcinoma or sarcoma, no lymphoma); untreated. Pre-regressional period: He met with his sons, felt encouraged by them and was moved by their sadness about him. One or a few days after the diagnosis the patient realised and came to appreciate that he had "suns, daughters in law and grandchildren" and he decided that he had to make the best of it. He seemed especially touched by his unmarried sun's decision to put forward his date of marriage (which would also free the patient from caregiving). He carried out his decision "to make the best of it", e.g. by making several trips with his new girlfriend to areas that he never yet visited and wanted to see. Follow-up: No tumors were visible on ultrasound, 5 months following diagnosis, nor on CTscans 7 months and 3 years following diagnosis. He has remained in good health for 5 years. F, man, age 53. History: As a child this patient frequently had no choice but to comply with his many older brothers and sisters. In his twenties: asbestos exposure. Lately various superiors had been disturbing and overruling his craftsmanship (carpentry) and way of working. He had felt too old to look for another job. Diagnosis: Epithelial mesothelioma.

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Pre-regressional period: His wife quit her job and sat next to his bed, up to eight or nine hours a day. The patient was advised against surgery by various family members and friends. In a crisis of powerlessness and indecisiveness, during which he was "disagreeable" and slammed the table with his fist, the patient decided on surgery. The tumor appeared unresectable. The patient was freed from his job and traveled with his wife. The tumor regressed spontaneously in a period of 8 months, as confirmed by CT-scan. The patient did carpentry in his own pace, according to his own designs. Follow-up: 5 Years later his chest X-ray was still clear. 6 Months later this interview took place, followed by a second interview by a psychotherapist-researcher. The interviews and one particular remark had left the patient "worrying and gloomy (--) everything had been dragged up". 5 Months thereafter a recurrence was diagnosed and treated successfully with radiotherapy. Two and three and half years later recurrence was noted, not amenable to further anti-tumor treatment. G, man, age 62. History: 25 Year old conflict and subsequent break between the patient and the church; retired aged 61. Diagnosis: Extensive abdominal non-Hodgkin lymphomas; untreated. Pre-regressional period. The patient received extreme unction following his request for a priest. Subsequently he suffered delusions and hallucinations, with themes regarding current and previous traumatic life-episodes. He was highly demanding and assertive. Ongoing visits and prayer by the priest gave him a "kick" and left him calm, satisfied and peaceful. For several weeks the patient 'oscillated' between these peaceful moods and his delusional and demanding states. Slowly the break with the church was resolved. Meanwhile the patient was bedridden and his weight had decreased from 71 till 45 kg. Last unction was administered for a second time. Five months following diagnosis he developed high fever and completely improved. Follow-up: The patient has remained in good health for 11 years. He stated that every week he experiences something in church that he cannot express. It seemed that an end to aggravating life-situations and an increase in essential activities and experiences preceded clinical improvement in these patients. This was accompanied by the manifestation of autonomy and problem focused coping. In all patients this psycho-social change itself was preceded by a moment in which negative consequences of certain situations were no longer accepted. In five out of seven patients it was observed that these situations bore a specific relation to a psychologically unsatisfactory coping with particular conflicts earlier in the patients' lives. The observed processes could take place without the patient showing any self-reflective, cognitive awareness of what had happened to them. This virtually rules out that the findings have been disturbed by 'effort after meaning' (or an imbuing of meaning after the regression as an epiphenomenon). In two patients (F,G) consciousness was temporarily disturbed. Three out of these seven cases that were most impressive from a clinical point of view were subjected to peer review. This review did not lead to a change of the hypothesis. Subsequently we compared these findings with the literature on psycho-oncological research. The changes in patients with spontaneous regression of cancer can be seen as a breaking away from passive coping styles or acquired helplessness, with regard to specific life-situations, and the adoption of active coping. These changes can be viewed as a result of re-manifestation of formerly repressed aspects of the personality. This is due to a confrontation with highly stressful situations, of which this re-manifestation of formerly repressed aspects of the personality is a more plausible outcome. Hence, these situations were not just met by a more

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active way of coping, but they called for a broader psychological change, which in turn lead to different coping abilities. On this basis a different way of coping becomes accessible compared with what was previously available in similar situations during the patient's life. Therefore the coping model of Lazarus and Folkman should be extended to include a notion of self-reference. Self-reference here means that certain situations account for changes in coping abilities. Thus particular situations may induce in the patient the abilities that he subsequently needs to cope more adequately with the situation than he would have been able to, had such a change in coping abilities not occurred. In a therapeutic approach, such an effect on coping abilities might be stimulated by simulating the situations that we have observed in patients with SRC, in dramatised replay. Passive coping styles may activate the CRH-ACTH-Corticosteroid Axis. This axis has been considered immunosuppressive. Breaking a pattern of passive coping might result in disinhibition of Natural Killer cells, macrophages, Cytotoxic lymphocytes and CD4+ helper cells, possibly supporting control of tumor growth. Interestingly, activation of this endocrinological axis may in turn increase passive coping. This results in a self-enforcing loop, not easily opened up in counseling or in life otherwise. We tested our hypotheses in two more cases of SRC, using similar patient and data collection and data analysis. H, man, age 24. History: Technical university, quit after some weeks ("too colourless"). Technical school. Melanoma in 2nd year. 4 Years of melanoma recurrences and surgical removal. Diagnosis: 4 Small sites of melanoma, shortly prior to and following excision of melanoma in his brain; chemotherapy refused. Pre-regressional period: Postoperative speech impairment freed this patient from a highly unsatisfying job. He refused chemotherapy and "revalidation" (judging the atmosphere as being "too hopeless") and opted for "training, aimed at recovery" instead. Confronted with his impediments, he actively engaged in solving related problems, like passing a special driving test. He enjoyed driving his "yellow convertible". His girlfriend says that he was badtempered. Tumors become stable for a month and then regressed. Follow-up: 6 Months later he gradually felt more dissatisfied about having nothing to do. Melanoma recurred in different sites. I, man, age 63. History: 11 Years prior to the diagnosis the patient's wife left him due to his alcoholic misbehaviour; according to her he had kept her at a distance, during all of their marriage. They never officially divorced and they had met occasionally. She had promised the patient that if he ever would really need her, she would be there for him. Diagnosis: Multiple abdominal sites of poorly differentiated adenocarcinoma; untreated. Pre-regressional period: The patient immediately called for his wife. When she entered his room, they threw their arms around each other and met "from one human being to another", according to the wife, for the first time in their marriage. They weekly visited the consultant together. For the first time in their relationship the patient offered her some excuse for his misbehaviour during their life together. His wife felt that "we 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; no signs of tumor were seen on a CT-scan, 6 months following diagnosis.

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Follow-up: Healthy for 2 years; right-sided supra-clavicular recurrence, treated with radiotherapy; abdominal tumors did not recur. Autonomy, problem focused coping, an end to aggravating life-situations and access to essential experiences and activities were noted again prior to the first signs of clinical improvement. Reviewing case I, two psychotherapists initially judged the patient to be in an -unchangedcontext of psychological regression. This suggested that his psycho-social change, preceding SRC, differed from what might have been considered a desired change from a therapeutic point of view. Secondly, however, the patient's changes were recognized as an existential shift, involving the development of a deeply human and intimate relationship with his former wife following the expression of formerly unexpressed needs, while the patient took responsibility for his previous harmful behaviour. Patients with SRC as a rule do not show gains in self-reflective awareness or cognitive insight. They rather happen to gain access to what is essential for them. Such access should be the aim of psycho-oncological counselling. Finally a case of possible SRC is described. J, woman, 26 years. History: The patient's sister informed her that she had an affair with the patient's then husband. Nine months thereafter the patient "came down with cancer, while she had his baby". Ovarian carcinoma was diagnosed, surgically extirpated and treated with chemotherapy; chance of cure was estimated at 50-60%. The patient divorced and developed an intimate relationship with a new friend. The patient went in extensive psychotherapy and dream analysis and practiced meditation and yoga. She was familiar with out of the body experiences. Six months prior to possible SRC, the patient dreamed about climbing a 'Godmountain': deciding 'to go down' was synonymous with living. Shortly prior to diagnosis: abdominal sharp pain, burning heat; nausea, headaches, excessive tiredness. Diagnosis: CA 125 rising to 110 U/ml; survival prognosis two months; estrogen withdrawal. Pre-regressional period: Deep crying following the confrontation with impending death. Subsequently the patient had an out of the body experience, during which she observed her body and decided that she wanted to live in that body. Follow-up: The day after the patient felt excellent. Three weeks later CA 125 was 5 U/ml. Estrogen re-use after five months; CA 125 remained stable around 10 U/ml for 7 years; good health. Clinical improvement was preceded by a so-called out of the body experience. During this autoscopic experience the patient had observed her body lying on the ground. After some evaluation, she decided that she wanted to live in this body. The next day her excessive tiredness and other physical complaints had gone and she felt excellent. Three weeks later her tumor-marker (CA 125) had normalized and she remained in good health. Possibly, processes on a spiritual level like the choice for life in the here and now of physical existence are implicated in SRC.

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C- Psychotherapy and the course of cancer De Vries study In 1987 professor Marco De Vries, pathologist and trained in several psychotherapeutic schools, initiated a so-called phase II trial to observe if psychotherapy might affect the course of cancer. This was the first protocolled study that –explicitly- was initiated to observe possible effects of psychotherapy on cancer development in individual patients. Weekly individual and bi-weekly group psychotherapy was given to people with cancer no longer amenable to regular anti-tumor treatment. If in such patients a decrease is seen in tumor growth, in time related to psychotherapy, one is allowed to hypothesise that such a decrease is caused by the psychotherapeutic intervention. In advance it was stated that if such an effect would be seen in at least one out of ten evaluable patients, the study outcome would be considered positive. Such a positive outcome would imply that further studies are useful, like for example so-called phase III trials that use a control group. The intervention was derived from experiential and existential psychotherapeutic schools (Frankl, Yalom, Perls and Assagioli f.e), but also from observations done in people with spontaneous regression of cancer (see section B) and from the observations by LeShan and others (see section A and B). De Vries et al. (1997) described the intervention as follows: “Central to the experiential approach is focusing on feelings, needs, aims and potentials of the person. This may help the patient to become aware of incongruities between cognitive and behavioural schemata and his or her actual feelings and needs. So, it may help the patient to restore congruence. This approach also emphasises 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 toward 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 was the promotion of group cohesion, which will counter social isolation”. In the end 35 patients could be evaluated. In five of them tumor growth stopped for three to nine months (four patients) or two years (one patient). This period was in time related to the psychological intervention (figure 10).

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Figure 10. Decreases in tumor progression, which were time related to psychotherapy (De Vries et al., 1997. Psycho-oncology, © John Wiley and Sons).

Spiegel study Prior to this, Yalom en Greaves (1977) had initiated a group therapy program for women with metastasised breast cancer. This group had not been started to study an effect of counselling on cancer, but just to see if group therapy might help people to cope with their ‘common tragic experience’. Another reason to start this group was for the therapist to learn from these patients and the group therapy. The authors state: ”Although it common knowledge that a serious confrontation with death often triggers a profound reappraisal of one’s basic relationships with oneself, others and the world, it is uncommon for a concentrated contemplation of death to enter the psychotherapeutic dialogue”. They hoped that a group with these patients, so close to death that continual denial is no longer possible, might teach them about “everyday psychotherapy with the living”. Groups usually consisted out of six or seven women with breast cancer. They met weekly, together with Yalom and Greaves, psychiaters, and usually with one or two assistant-psychiaters, social workers or counsellors that were willing to learn from the group process. Part of the original paper will be given here: (© American Journal of Psychiatry, 1977).

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Two therapists that took part in these groups, the psychiatrist Spiegel and the social worker Bloom, started a randomised, prospective study to observe the psychological effects of these groups. 86 Women were enrolled into the therapy (50 women) or control condition (36 women). This study showed that women, who took part in the therapy-groups for a year, were less anxious, had higer vitality and were less tired and confused. Also, they took less alcohol and sweets and they smoked less than the women in the control condition. In this first year 42% of the women in the control condition died, versus 39 % in the control group. Ten years later, though, Spiegel and collegues (1989) observed double survival in the women that had taken part in the group therapy program (figure 11).

Figure 11. Survival of women with breast cancer after supportive-expressive , weekly group psychotherapy; A = control group; B = therapy group. Spiegel et al., 1989; ©Lancet. Further analyses revealed that the difference in survival could not be attributed to differences in medical treatments (Kogon et al., 1997). Fawzy study A much shorter and quite different type of psychosocial intervention was given to 34 patients with melanoma by Fawzy et al. (1990a/b, 1993). During a period of six weeks these patients met weekly for 1 ½ hours. Groups consisted out of seven to ten persons. These groups were led by Fawzy and Norman Cousins (for those who are familiar with it: this is the Norman Cousins who became well known for his self-made treatment for hart-complaints: part of this treatment was regular watching of slapstick movies; another major part was taking control over your disease and treatment). Prior to the intervention psychological measures were obtained by means of the profile of Mood Scale (POMS). This scale measures anxiety, depression, hostility, lack of vigor, tiredness and confusion. Also, Total Mood Disturbance (TMD) had been established. Although these melanoma patients had a

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fairly good prognosis, psychological characteristics proved similar to those seen in patient with AIDS, leukaemia prior to Bone Marrow transplantation and cancer in general. Patients especially suffered from anxiety; their anxiety concerned: - death. - treatment. - recurrences. - becoming a burden for others. - being alienated - decrease in performance or loss of social value or financial independence - loss of ability to realise certain goals in life. Fawzy et al. observed that patients would report fairly easily about effects of the disease on family life, work, hobby’s and leisure activities. Also they might indicate that were confused or terrified or less efficient. It was more difficult to frankly state that they felt depressed or anxious. The six meetings in the therapy group had the following themes: 1) Education about health: information was given about food, physical exercises and the use of sun protection. the most important result of this part of the course was to enable people to continue favourite, daily activities in a healthy way. 2) Increasing problem focused coping with disease related problems. Part of this was to acknowledge and to make explicit that the disease brought insecurity, invalidity and distress. Problem solving attitudes were explained and discussed. Subsequently, it was discussed how these approaches could be applied to individual problems and situation of the participants. In this way members could make use of each others capacities to solve particular problems. Also, illustrations were shown of common problems and ways how to deal with them. These concerned: - loneliness and isolation. - anxiety and fear. - keeping up one’s mood with social support. - patient-doctor relationships. - changes in body-image’. - sexuality and personal contact - general mood. - communication. - alienation. - depression. 3) Stress management techniques and becoming aware of stresses and of feelings of tension. This included training in relaxation techniques. 4) Psychological support from the research-team. This support was a continuous theme during all of the training sessions. This had started with discussions about reinforcement of hope and determination and mobilising reserves to better deal with stresses. Also, group members gave mutual support with regard to the illness, family matters or patient-doctor communication. Helping one another may remind us of the work by Yalom and Greaves and Spiegel. The educational element of this intervention can be summarised as learning: - about the illness itself. - how to deal with daily consequences of the disease. - to express emotions. - to live life to it’s fullest. - to find resources for help and support. Psychological results Immediately after the intervention and six months later, patients in the therapy group used more active and expressive coping than patients in the control group. Also, they made more use of distraction. Patients in the therapy group used less passive-avoidant techniques, like f.e. ‘preparing for the worst and solitary avoidance like staying away from other people.

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Psychological turmoil, as measured with the POMS, had decreased in the intervention group. Interestingly, these differences were slightly visible immediately after the intervention and became significant six months later. Coping and mood were found to be related: patients using passive coping, including use of alcohol and drugs, avoiding contact, suppression of feelings and preparing for the worst, were suffering more from anxiety, depression, confusion, lack of vitality, anger and overall mood disturbances. On the contrary, knowing about the disease, creating meaningful activities, active involvement in treatment, talking with others to find information and support, was related to more vitality, less tiredness or anger and less overall mood disturbances. Also, looking for distraction was correlated with less anger. Immunological measures (Fawzy et al., 1990b). Blood samples had been taken prior, immediately after and six months after the intervention. Immediately and six months after the intervention an increase was observed in cytotoxic T-cells; six months after the intervention this was especially so for so-called Natural Killer Cells (CD16 and CD56 positive). It is not clear whether these might be CD11+ macrophages. These macrophages are also CD16 positive. Van Ravenswaay et al. (1992) observed many of these macrophages in the vicinity of tumortissue, a.o. melanomas. In the Fawzy study it was observed that six months after the intervention cytotoxic T-cells in the therapy group showed a stronger response to interferon. These increases were stronger in patients with low depression and anxiety. Also, anger was related to an increase in cytotoxic activity. According to the group leaders, this anger was related to assertivity, challenging behaviour and resistance, not to irritation or burst of anger.

Effect on course of disaese. Six years after the therapy program, patients in the therapy group showed longer disease free periods and longer survival than controls. Zes jaar na de studie bleek dat de mensen uit de therapiegroep zowel langere ziektevrije perioden kenden als langere overleving (figure 12a and 12b).

Figure 12a. Cumulative disease-free periods in patients with melanoma after a six week group psychotherapeutic intervention. Dotted line = therapy group; solid line is control group. Fawzy et al., 1993; © Archives of General Psychiatry.

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Figure 12b. Cumulative survival in patients with melanoma after a six week group psychotherapeutic intervention. Dotted line = therapy group; solid line is control group. Fawzy et al., 1993; © Archives of General Psychiatry. Ten patients from the control group had died, compared with three patients from the therapy group. The differences in survival were not attributable to differences in gender, (Breslow) thickness of the melanoma nor the site of the tumor, nor were there any differences in treatment between the two groups. Survival in the control group was identical to a matched group of other melanoma patients. This being so makes it more likely that the longer survival was a result of the therapy program. Further analyses showed no relationships between initial POMS Total Mood Disturbance (TMD) scores and length of survival. There was, however, a small subgroup of patients with low distress scores and poor survival compared to patients with higher distress scores. Although the authors reckognised that some suppression of emotions might protect against being overwhelmed by anxiety and depression, they suggest that suppression, if it goes on too long, hampers someone’s ability to cope adequately with the situation. Although no relationship was seen between initial POMS TMD and survival, a relationship was observed between initial high active coping and good survival. This was true both for therapy and control patients. Also, a relationship was seen between acquiring active coping and survival. Therefore the authors stated: “When coping improves, so does outcome”. This suggests that interventions may be most beneficial for those patients that are passive and avoiding in the beginning. However, as long as these treatments are not offered to all patients, it still depends very much on the patient if he or she is active and symptomatic enough to find these treatment modalities for himself or herself. Passive and seemingly undistressed patients therefore, that would benefit most, have the lowest chance of getting such therapy. The observations with regard to initial distress and changes in coping may remind us of the observations by Van Baalen and De Vries (section B) in patients with spontaneous remission of cancer. In these patients, compared to those with progressive cancer, they observed large fluctuations in mood, including moments of deep despair and crisis. They wondered whether such an intensive process fostered a psychological transformation and the development of a more adequate psychological outcome.

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Immunologic mechanisms Fawzy et al. only observed a relationship between initial Natural Killer Cell Activity (NKCA) and disease free period, but not survival, nor between post-therapy NKCA and disease-free period or survival. So, if there is a role for immunologic mechanisms at all, it is a complex one. This may remind us of observations in spontaneous remission of primary melanoma: such remissions are related to poorer overall survival. It has been observed that there is more vascularisation in primary melanomas that regress spontaneously. High vascularisation may foster the potential for immunologic reactions, but also it increases the chances for the occurrence op metastases. So, the area is truly complex, also at the biological level. Kuchler study Kuchler et al. (1999) randomised patients with gastrointestinal cancer into a treatment and a control group, each comprising 136 patients. During the period they were in the hospital, awaiting surgery, the patients in the treatment group received individual psychotherapy. Prior to the operation they received an intake meeting with a personal therapist. They discussed how the patient had coped with threatening situations earlier in his life and which support he might have from other people this time. They assessed anxiety and depression and discussed how the patient had coped with the diagnosis sofar. Patient were encouraged to raised question about diagnostic procedures and treatments. The therapist tried to build a supportive relationship with the patient. After this initial session, patients were visited once in two days ore more frequently if desired. In the pre-operative period most attention was given to diagnostics, outcomes, insecurities and anxiety. The therapist tried to foster hope and trust. He tried to create a ‘fighting spirit’ and to decrease feelings of hopelessness and helplessness. Also, the therapist made others aware of the psychological state of the patient and sometimes he behaved like the patient’s ‘advocate’, be it without interfering with medical decisions. Two years after this intervention, longer survival was observed in the treatment group (figure 13).

Figure 13. Survival in abdominal cancers, after peri-operative, individual psychotherapeutic support; upper line = therapy group (n=136), lower line = control group (n=136). Kuchler et al., 1999; © Hepato-Gastroenterology. From the 136 persons that had been assigned to the treatment group, ten patients had withdrawn after randomisation. From the 136 patients in the control group, 34 patients had expressed that they wanted to receive psychotherapeutic support, too. This provided to them. Because of the intention-to-treat analysis all of these patient remained in the groups that they had been assigned to initially. This means

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that the effect on survival probably is even larger than figure 12 suggests: ten ‘therapy’ patients did not receive any therapy at all, while 34 ‘control’ patients actually received therapy.

Negative Studies Linn study Linn et al. (1982) divided 120 men with various intractable cancers into a therapy group (62 men) and a control group (58 men). 33 Men in the therapy group and 32 in the control group suffered from lung cancer; the other ones suffered from a.o. colon, stomach, pancreatic, prostate and (urinary) bladder carcinomas

Three, six, nine and twelve months since the onset of counseling, patients had filled in questionnaires. Patients in the therapy group had more favourable scores with regard tot loneliness, life-satisfaction, self-esteem, self-appreciation and sense of control. Lower scores were seen for depression, but only three months after onset. No significant differences were seen in survival; in the therapy group there was a non-significant tendency to poorer survival (figure 14).

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Figure 14. Survival in cancer patients no longer amenable to regular treatment after individual counseling versus no therapy; upper line = control group (!), lower line = therapy group. Modified ‡ after Linn et al., 1982, © American Cancer Society.

Ilnyckj study Ilnycki et al. (1994) randomised 127 patients with various types of cancer into four groups. One group of 31 patients met weekly for a supportive group program during a period of six months. These meetings were supervised by two social workers. A second group, comprising 30 patients, met in a similar fashion. Supervision by two social workers, however, was given only during the first three months. A third group of 35 patients met without any supervision at all. A fourth group, not meeting at all, served as a control group. Group leaders in the first two groups had to encourage group discussions. Also, their task was to create an atmosphere that would foster openness between members for sharing. Group leaders were supportive and instructive. No differences were observed in survival (figure 15).

‡ The original figure showed the same two curves, together with two curves of survival in lung cancer patients only. Because of the four lines in the original figure, it is not very clear that the curve of the therapy group as a whole is lower than the curve of the controlgroup.

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Figure 15. Survival in patients with various malignancies after weekly group meetings for a period of six months with or without a group counsellor (social worker) or no meetings at al (control). Ilnyckyj et al., 1994; © Annals RCPSC. Edelman study Edelman et al. (1999) applied Cognitive Behavioral (group) Therapy (CBT). 121 Women with metastasised breast cancer were randomised into a therapy and a control condition. Patients in the therapy group met weekly for a total of eight sessions. Each therapy group also had one overnightstay, together with family-members. Thereafter there were three monthly sessions. In the first session patients learned to identify negative and ‘maladaptive’ thoughts and to challenge the correctness of their ideas. In the second session patients learned several behavioral techniques: - meditation/relaxation to combat anxiety. - choosing problem focused coping. - establishing goals - group exchange of specific problems. Patients were encouraged to actively and assertively communicate with friends, family and doctors. Also they were encouraged to use the potential of their environment to deal with stressful events. Also they were encouraged to make use of existing interests and preferences of people in their environment.

36

After the eight weekly sessions and the overnight stay, evaluation with the Profile of Mood Scale (POMS) showed a decrease in depression and total mood disturbance, as well as an increase in selfappreciation. There was a trend toward more vigour the therapy group. Three and six months later these differences were no longer visible. Edelman et al. did not observe a significant difference between length of survival in the therapy group vs. the control condition. There was a non-significant trend toward shorter survival in the therapy group (figure 16, left). This difference could be attributed to slightly less favourable disease characteristics of patients in the therapy group. This difference disappeared when survival was measured from diagnosis of metastases (figure 16, right).

37

Figure 16. Survival in women with metastasised breast carcinoma after Cognitive Behavioural Therapy. Left: survival from study entry. Right: survival from diagnosis of metastases. Edelman et al., 1999; © Psycho-oncology. Naturally, Edelman et al. wondered why they did not observe differences in survival as they had been observed by Spiegel et al. (1989). They notice that Spiegel et al.’s intervention differed in some respects: it was non-directive, aiming at expression of thoughts, feelings and concerns within a very supportive environment. Also, the intervention lasted much longer. On the other hand, Goodwin et al. (below) used a supportive-expressive model, without seeing effects on survival. Besides, as Edelman et al. note: Fawzy et al. applied an even shorter intervention which was psycho-educative, and they did observe longer survival in the therapy group. Goodwin study Goodwin et al. (2001) explicitly tried to conduct a formal Spiegel et al. (1989) replication study. They randomised 235 women with breast cancer in a 2:1 ration into a therapy group of 158 women and a control group of 77 women. Women in the therapy condition met weekly in a group of 8 – 12 women during 90 minutes. Therapy aimed to strengthen mutual support and the expression of feelings with regard to cancer and the wide range of effects of the disease on physical, emotional, social and spiritual aspects of life. Participants were encouraged to support one another also outside the group meetings. Participants were given opportunity and support to speak about the effects of the illness, its treatment, and changes in their self-image, roles, relationships, with family members, friends, coworkers, health care providers, and others. they discussed the life-altering nature of the illness and strategies for coping and communicating. Patients were invited to attend at least one year. Group leaders received standardised training of a detailed review of a therapy manual by Spiegel and Spira and 2-day workshops every 9- 12 months attended by Dr. Spiegel or his associate Catherine Classen. This included discussion of therapeutic principles and reviews of videotaped sessions, and monthly review of a videotape of randomly selected sessions, with written feedback to promote the consistent delivery of the intervention. In the therapy group a decrease was seen in distress, especially in those patients that had shown high distress scores at the beginning. Also, a decrease was observed in pain, again especially in those patients that had been in more pain in the beginning. There were as no significant difference survival, although a (non-significant) trend was observed toward shorter survival in the therapy-group (figure 17).

38

Figure 17. Survival in patients with metastasised breast cancer after supportive-expressive groups psychotherapy, compared with a control groep. Goodwin et al., 2001; © New England Journal of Medicine. Discussion Spiegel-Goodwin Naturally, the outcome of the Goodwin study causes concern. One possibility is that the therapy by Yalom and Greaves, as applied in the Spiegel study, did have the observed effect on survival, but the essentials of this treatment have not been taught effectively to the therapists of the Goodwin study. There are some observations that warrant this possibility. Spiegel’s co-worker Spira once gave a workshop to therapists and researchers involved in the phase II trial at the Helen Dowling institute in Rotterdam. I know that most of the attendants, including myself, were not very impressed. The workshop had a fairly strong cognitive character and lacked the experiential end existential qualities and depth that pervaded the work at our institute and that we knew from Yalom and Greaves. Considering the strong role for the manual in the conduct of the intervention principles to the Goodwin study therapists, this is a point of great concern. Second, the way in which therapists were made familiar with the therapy model strongly differed from the way in which Yalom, Greaves and Spiegel had trained their own therapists. Many years earlier Yalom and Greaves (1977) had already stated: “...it has been our experience that a period of several months’ apprenticeship is necessary for therapists to deal with their own dread of death so that they can work effectively”. “Several months’ apprenticeship” is quite something else than a manual and 2 day workshop during nine months. Psychotherapy is not a pill, that enables one to easily conduct a replication study. Psychotherapy is very dependant on the personal qualities, experiences and psychooncological know-how of the therapists involved. Discussion Fawzy – Edelman The Fawzy et al. (1993) intervention was psycho-educative. At first glance this may seem familiar to cognitive behavioral. Fawzy’s et al. program, however, had a strong emphasis on problem solving, emotional expression and social support by family and staff members. These elements show resemblance with the intervention by Yalom, Greaves en Spiegel. With regard to the educative element, Rudy Rijke (personal communication) emphasised that this safeguards the personal autonomy of the participants. There is an important difference between saying ‘you should be autonomous’ or ‘autonomy was found to increase survival’. The latter statement is a piece of neutral information and it is up to the patient to use it or not. The former results, as De Vries has always emphasised, into an unsolvable ‘double bind’: if the patient becomes autonomous, he complies with the instructions of the therapist, hence he is not autonomous.

39

Edelman et al.’s intervention was truly cognitive-behavioral. However, correcting ‘maladaptive thougths and beliefs’ might even be a dangerous attempt. In seemingly unrealistic thoughts or anxieties, a patient may express important aspects of himself or of the world around him. A seemingly farfetched example is in he work of the jewish therapist Souget. Thirty years ago his wife travelled to Israel, together with their three children. At that moment Souget had a very anxious experience and he was sure he would not see them again, alive. He worked his anxiety through in psychotherapy sessions and the anxiety seemed to be related to a traumatic event in World War II. His wife and children returned safely. Twenty five years later, his wife was killed in Israel during a terrorist attack, in which one of his daughters was involved as well. Souget does not relate the former anxiety to this later bomb blast; nevertheless, each of us may have his or her own understanding here. Anyway, in a cognitive-behavioral approach the anxiety attack would have been treated along the lines of ‘maladaptive thougt’. Along those lines, any possible, deeper meaning either from the past or the future, would have been missed beforehand. Edelman et al. give an example themselves, that may show a possible dangerous effect of the CBT model. When the a woman, mentioned above, expressed that she felt her husband didn’t love her, Edelman et al. choose to ‘correct’ what they consider a maladaptive thought. ( “not asking about my treatment doesn’t mean he doesn’t care”). Actually, there is quite a chance that this woman correctly experienced a lack of care from her husband. Allowing herself this painful and confronting experience may have been a courageous act and may result in significant transformations in the relationships, her attitude and her own psychological configuration, autonomy and independence. The action by Edelman et al. pushed all of this back under the surface and may foster further suppression or even repression and may negatively affect the course of this woman’s cancer . In the Linn study another potential problem becomes visible: one of the therapeutic aims in this study was to decrease denial. But Pettingale en Greer (1985) saw a positive effect of denial on survival. Denial at first glance may seem the opposite of a psychotherapeutic aim for ‘awareness’. Yet, we should be careful her. Denial seems a healthy protective mechanism. It keeps stresses outside, when they are to big, yet, to deal with them. Thus, denial may prevent anxiety and depression. But if a feeling of anxiety or depression is already there, somewhere in the person, then suppression is not protective. The stress is already there, locked within, to silently affect the person. Then experiential work is useful to become aware of what is going on inside and that may foster true coping. Apart from the oncological setting, but illustrative, is the study by Wilhelmese and a.o. Holger Ursin (1990). Ten sessions of cognitive therapy were given to patients with stomach ulcers and these patients were compared with a control group. Therapy aimed at pain, marital problems, depressions, anxieties or phobias. In agreement with Beck ‘irrational beliefs’ were approached with ’cognitive restructuring’. After 28 patients had been randomised and 14 of them had received therapy, the study was stopped abruptly because intermediate analysis showed more ulcer recurrences in the therapy group: after ten weeks 28% of the therapy patients had remained ulcer-free, vs. 71 % in the control condition. This quote may serve here: “Cognitive therapy is rearranging deckchairs on the Titanic”. To further develop psycho-oncological interventions it seems wise to take into account the psychological premorbid characteristics of patients with cancer (section A), to look at factors that seem to be related to longer survival or even spontaneous remissions (section B) and to extract the elements of interventions that showed effect on survival (this section C). This saying may accompany us: “Psychotherapists should grasp the opportunity to bring their skills to the medical arena, but need to subject newly devised interventions to well designed and methodological rigorous research.” (Sidney Bloch en David Kissane, 2000)

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