Johannes Bitzer1
(1)
Department of Obstetrics and Gynecology, Women’s Hospital, University Hospital Basel, Spitalstrasse 21, 4031 Basel, Switzerland
Johannes Bitzer
Email: JBitzer@uhbs.ch
15.1 Definitions of Quality of Life
There are many definitions of the quality of life depending on the perspective which is taken (economic, political, medical, psychological, etc.). WHO has given over the course of time different definitions:
· “individuals’ perception of their position in life in the context of the culture and value systems in which they live in relation to their goals, standards and concerns” (WHO 1993)
· “Complete physical, mental and emotional wellbeing” (2000)
A newer definition defines the health-related quality of life as the impact of the health condition (disease) on physical and psychological functioning (Fig. 15.1).
Fig. 15.1
Definition of quality of life
To simplify and to have a practical approach, we suggest a definition which takes into account the subjectively experienced needs of an individual and the degree to which these needs are satisfied (Fig. 15.2).
Fig. 15.2
Quality of life
This definition allows or changes on both sides (needs and fulfilment of needs) to reestablish a new balance. The impact of breast cancer and its treatment on the life of the patient comprises many dimensions and almost all aspects of life:
· Physical symptoms: Pain, fatigue, immobility, hair loss, etc.
· Emotions: Fear, anxiety, depression, tension, loss of self-esteem and body image changes
· Social, financial and professional stress: Changes in professional roles
· Family: Roles and interaction pattern
· Problems with the medical system: Lack of time, change of physicians, communication problems, etc.
· Existential and spiritual challenges: Confrontation with death and searching sense
· Sexual life: Loss of desire, pain, fear of losing the partner, etc.
Specific stressors for breast cancer patients are:
· Threat to femininity and female Identity
· Sexual life impairment
· Premature menopause
· Premature infertility
· Role changes
· Housewife, mother, partner, professional and cancer
· Culturally defined gender roles
The first reaction to the diagnosis of the disease is similar in many patients as:
· Shock, numbness and disbelief
· Desperate and hopeless
· Mixed mood state with dysphoria, irritability and fear depressive states
· Loss of appetite and sleeping disorder
· Difficulty to concentrate
· Intrusive thoughts
Symptoms usually regress during a 7–14-day period
15.1.1 The Stress Response: General Aspects
Different levels of the longer lasting stress response can be distinguished as:
Emotional reactions
· Anxiety and fear
· Death, depression disfigurement disability and dependence
· Loss of control, anger, shame, helpless and hopeless
Cognitive reactions
· Threat to life
· Blame
· Punishment
· Loss
· Injustice
· Destruction
· Chaos
· Non-sense
Behavioural response
· Becoming a patient
· Acting out
· Help seeking behaviour
· Withdrawal
· Social isolation
· Passivity
· Aggressive behaviour
Physicians should notice and understand the individual stress response to help patients with adaptation difficulties to look for changes in their coping pattern.
The individual response to the disease will depend on the person’s defence and coping mechanisms.
Defence mechanisms are semi-conscious or even unconscious psychological reactions and include suppression, denial, isolation, projection, displacement, etc.
Coping mechanisms are emotional expression, humour, cognitive reframing, finding sense, getting information, optimism, sublimation, etc.
These mechanisms will depend on the patient’s personality, previous life events, education, social support and belief symptoms.
If the defence and coping mechanisms cannot help to create a new psychological balance in the patient, psychiatric morbidity may occur (Table 15.1).
Table 15.1
Psychiatric morbidity of cancer patients
|
Prevalence |
|
|
Anxiety disorder |
Screening 50 %, interview ca. 30 % |
|
Depression |
Screening 50 %, interview 15 % |
|
Adaptation disorder |
Screening and interview ca. 50 % |
|
Post traumatic stress disorder |
Screening or interview ca. 30 % |
|
Other symptoms: Sleeping disorder (20–70 %), Fatigue (20–35 %), Cognitive impairment (20–75 %) |
|
If general counselling and a helpful therapeutic relationship are not enough, more specific interventions should be proposed.
There is a vast literature on psychological interventions.
More than 10,000 empirical studies are published in the literature.
Last major Meta-analysis with more than 18,400 studies showed a summary of those interventions, which are very well evaluated. The following interventions lead to an increase in the quality of life of those cancer patients who ask for or use these psychotherapeutic possibilities:
· Group therapy
· Supportive psychotherapy
· Cognitive-behavioural therapy
· Exercise and body-centred approaches
A prerequisite for efficacy is the willingness of the patient to work in a psychotherapeutic setting which includes the readiness to accept help.
15.2 Sexual Health and Breast Cancer
There is a dialectic relationship between sexuality and cancer: Sexuality is commonly associated with life, love, joy, passion, etc. and cancer is for many of us synonymous with destruction, death, loss and sadness. This antinomy is reflected in typical irrational health beliefs, which can be found not only among breast cancer patients but also among physicians.
· Sex is something luxury which does not have any place in the serious fight for survival. Sexual life is no more possible in the diseased body or may even be harmful for that body.
· Losing one part of sexual function means that the entire sexual life has to be given up.
· Intercourse and sexuality are identical.
· Being able to have intercourse defines sexual identity.
In these rather destructive health beliefs the concept of sexuality is reduced to intercourse or the physiology of the human sexual response. It is however necessary that we are reminded as physicians and that we remind our patients that there are several dimensions to the sexual life of an individual. Besides the genital response, sexuality has to do with one’s identity (being a woman or being a man), with emotional intimacy (feeling close and feeling understood), with body image (being in accordance with the body, feeling beautiful and attractive), and last but not least with the potency of reproduction (with for a child and feeling fertile).
15.2.1 Sexual Dysfunction in Women with Breast Cancer
The prevalence of sexual dysfunction has proven to be high in breast cancer patients in several studies.
· Anderson found severe and long-lasting sexual dysfunctions among 50 % of patients.
· In another study, hypoactive sexual desire disorder was observed in 64 % of cases, 42 % suffered from problems with lubrication, 38 % reported dyspareunia and 30 % had difficulties reaching orgasm. More than half of the women indicated that they had problems to accept their body.
· In a longitudinal study, it was found that the quality of life diminishes during the diagnostic and the primary therapeutic phase but recovers with time. Only sexual life suffers a persistent deterioration.
· In a case–control study with women after breast cancer and under chemotherapy, all domains of sexual function were significantly inferior to controls. Multivariate analysis showed that vaginal dryness was an important variable influencing and modifying all the other domains of the sexual experience and explaining a large proportion of the difference between patients and controls.
· Concerning the types of surgery, Bukovitch found that there was a considerable diminution of sexual satisfaction in women after mastectomy and breast-conserving surgery without a significant difference between the two groups. In both groups, the acceptance by the partner was considered either better than before the operation or the same like before. The only difference was that 58.3 % of patients after mastectomy reported difficulties with their body image, while this affected only 44.9 % among patients with breast-conserving therapy.
Chemotherapy seems to have a deleterious effect on sexual function not only during treatment but also up to 3 years after treatment and this mainly in premenopausal women.
Tamoxifen alone does not show negative effects among women beyond 50 years, while zoladex and the combination of LHRH with tamoxifen lead to negative effects on sexual function.
Looking at variables that have an influence, Speer found in his study that patients had low scores in all domains of sexual function except desire and that there was no correlation between the degree of sexual dysfunction and the type of cancer or plasma values of testosterone. The distress linked to the relationship was the most important variable to explain arousal problems, orgasm difficulties, satisfaction and sexual pain.
In most studies age, relationship difficulties, and depression were the important factors contributing to sexual dysfunction of the patients.
In another study, Greendale found that two among three sexual domains were influenced by the quality of the relationship, vaginal dryness, sociocultural factors and hot flushes. Other factors were related to only one domain of the sexual experience: Age, the time since diagnosis, breast conservation, presence of comorbidities, urinary incontinence, body image, plasma values of bioavailable testosterone, LH and SHBG [1–9].
15.2.2 Breast Cancer and the Relationship: Risk Factor or Resource for Healing
The disease represents a huge challenge to the couple and as has been shown before the quality of the relationship is a predominant factor for the sexual life of the patient. To better understand the complex changes for the couple, it is useful to have a look at the different changes the patient has to cope with:
· Overcome the fear of death
· Integrate the surgical or other physical changes into her body image
· Reestablish self-confidence and confidence in her body
· Cope with the recurrent pain episodes and the fatigue
· Cope with menopausal symptoms
· Overcome phases of depression and exasperation
· Accept a certain reduction in activities and physical and mental fitness
All these efforts are experienced by the partner and are accompanied by him or her. This means that there is a fundamental restructuration of the relationship. For clinical purposes, we can distinguish several axes on which the couple has to redefine and reestablish a functional balance.
15.2.2.1 Axis Autonomy Versus Independence
This axis describes the hierarchic or power dimension in a relationship. The female patient has at least for a while to accept a diminution of her autonomy and an increase in dependence on the partner. As a reaction to this, the partner has to respond to this change with an increase in involvement and care, which may need a redefinition of roles. For the couples in whom the autonomy of the woman was an essential part of her self-esteem, these changes may lead to aggressive reactions by the patient and misunderstandings among the partners.
15.2.2.2 Axis Symmetry Versus Complementarity
There are couples in whom the completion of daily tasks, the social positions, and the competences are equally distributed and symmetric and other couples in whom there is much more asymmetric complementarity. The disease may demand a reorganisation of tasks and competences and a flexible adaptation. For couples with rigid symmetry or complementarity, this may present a crisis to which they are not used or for which they have to develop new patterns of interaction.
15.2.2.3 Axis Closeness Versus Distance
The physical change and the changes in physical and mental well-being can at different moments in the same patient lead to an increased need for emotional closeness or sometimes may create a need for more distance and being on her own. Couples who are unable or unused to modify closeness and distance and who are either very close or very distant are at risk to exaggerate the pre-existing pattern like getting into an symbiosis on one hand or an alienation on the other hand.
Taking into account these complexes, it becomes evident that the interaction of the couple may become very difficult with a lot of possible misunderstanding and communication problems.
In the first place, pre-existing conflicts can be reactivated by the disease and get a new importance in this crisis.
Second, the patient feels threatened and searches a new internal balance and to some degree a new definition of herself, a “partially new” identity.
Third, the partner has often a lot of ambivalent feeling fluctuating between empathy and frustration, between hope and guilt and between care and aggression. He too has to find a new internal balance for himself.
Finally, both of them often are afraid of the changes and the outcome of redefining their relationship.
15.2.3 How Can We Help?
The main task to facilitate the talk about sexuality and to help patients and couples understand the impact of the disease on their sexual life.
We propose the following steps:
1.
2.
3.
4.
· Danger (Threat)
How does the patient experience the threat of the disease to her or his life?
· Destruction
Does the disease or treatment have a direct impact on the integrity of sexual organs?
· Disfigurement
Does the disease lead to a change in the body’s outer appearance with a possible negative emotional impact?
· Disability and pain
Is the disease causing chronic pain and motor disability which may impact on the patient’s capacity to enjoy the bodily expression of her sexuality?
· Dysfunction
Does the disease lead to an impairment of the sensorimotor and sensovegetative innervation of the physiological processes involved in the human sexual response?
· Dysregulation
Does the pathophysiology of the disease have an impact on the neurobiological and neuroendocrine processes involved in the central or peripheral regulation of the sexual response cycle?
· Disease load
Is the disease accompanied by an impairment of intimate physical mechanisms like micturition and defecation?
· Drugs
What is the impact of the drugs used for the treatment of the disease?
4.
Summarizing this information will allow to define together with the patient and the partner the sexual problem and help them understand the impact of previous life experiences, disease-specific factors, and the way of coping with the disease on the sexual life of both.
15.2.4 Therapeutic Plan
After having established a comprehensive explanatory diagnosis, treatment option should be discussed with the couple.
The first question refers to the individual objectives regarding change:
· “What is good and valuable in your sexual life and what should remain as it is?”
· “What should change in your sexual life and how would you notice that change has taken place?”
· “Are there different levels of objectives like ideal scenario, good enough scenario and acceptable scenario?”
All couples need basic sexual counselling.
The contents of this general session should be the following:
· Information and education about the sexual problem, its medical name and prevalence
· Information and education about the biological, psychological and social factors contributing to the problem along the line of the diagnostic pathway explaining general predisposing and maintaining factors and disease-specific factors using the 8 Ds
· Education about possible gender differences in response to disease, stress, and sexual difficulties
· Discussion of the individual’s and couple’s concept of sexuality and love
· Discussion of possible new definitions and orientations and new needs with respect to love and sexuality
For many patients in the clinical setting, this psychoeducational intervention is not only helpful but also may be sufficient as a first step and basic sexological care.
15.2.4.1 Individualised Sexological Treatment
There are basically two groups of therapeutic options physicians should have knowledge about:
(a)
(b)
15.2.4.2 Example Couple Therapy
Couple therapy can provide help for the patient.
· The patient has often to learn how to express and verbalise her emotions in a way that allows a dialogue with her partner.
· She has to become aware of her requests and exigencies she has towards her partner and the environment and how to put this into words and phrases.
· She has to rebuild her body image and find out what her sexual wishes are, what has changed, and what has remained the same.
Couple therapy can provide help for the partner.
· He has to determine for himself the significance and importance of his partner’s disease for him.
· What is he going to lose? Which are the changes he is afraid of or he feels threatened by? What role do feelings of guilt play for him and how is he handling these feelings? Which are possibly controversial feelings and internal conflicts he has as a reaction to the disease of the partner?
· He has to redefine his relationship to the damaged body of his partner, of his emotions and his feelings and behaviour. He also has to redefine his sexuality and the couple’s sexuality.
Couple therapy can provide help for the couple.
· One of the largest difficulties lies in the need for open communication. The physician can help to open up and maintain such a dialogue which will develop through different phases with ups and downs, with good and bad feeling and with learning processes for both. The major functions of this moderated dialogue are catharsis, “putting negative feelings and conflicts on the table”, increasing insight and mutual understanding, defining the roles, defining the problems to be resolved and searching for solutions.
Systemic questions put forward by the physician can catalyse this dialogue:
· What do you think your partner should change in her/his behaviour and what do you think that he/she should maintain?
· According to your experience what are the consequences of the disease for your partner’s sexual life?
· What do you think are the consequences for your relationship?
· What do you think can be changed and what has to be accepted?
· What are impossible and possible solutions?
This moderation can catalyse a constructive communication between the partners and thus help that the relationship becomes a healing resource and not an additional stressor or risk factor.
References
1.
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2.
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3.
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4.
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8.
Speer JJ, Hillenberg B, Sugrue DP, Blacker C, Kresge CL, Decker VB, Zakalik D, Decker DA (2005) Study of sexual functioning determinants in breast cancer survivors. Breast J 11(6):440–447PubMedCrossRef
9.
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