Article published in 'Klinisk Sygepleje' ('Clinical Nursing'), Munksgaards Forlag, no. 1, Copenhagen: February 1996. Copyright: Kirsten Scherrebeck, 1996. Loss of a breast - breast cancer, body loss and breast reconstruction By Kirsten Scherrebeck, registered nurse. When a woman is sent to hospital to have a breast removed because of breast cancer - and when she comes in for aftercare - there is generally a major focus on the illness itself, the physical symptoms and on survival. However, patients send out numerous signals which indicate that they have more problems and other problems. This is also the case for women sent to hospital to have a breast reconstruction. The nurse notices these signals but does not always reflect on them, let alone act upon them, and this may lead to insufficient care. Women often express a feeling of having experienced a lack of understanding within the health services system. Body and cancer Every year 27,000 Danish people receive a cancer diagnosis. Most of these people experience this diagnosis as a serious strain comprising a threat of the loss or a shortening of their lives. At the same time they experience a major fear of the sufferings which the cancer disease may lead to. In connection with having a cancer disease many people also experience a change of their body, body function and appearance - either as a symptom of the disease or as a consequence of treatment. Since body and appearance is an important part of the personal identity and self perception, such changes may be a very heavy strain - not the least in a period and in a culture with a heavy focus on body and health. In the plastic surgery ward where I work I experience daily work with people with a cancer diagnosis and people who have experienced disfiguring and body altering surgical intervention or traumas. The treatment of cancer patients at our ward is surgical which often means that they experience surgical intervention which changes their appearance and strains the patients' view of themselves and their worth. In our ward we also have patients who are sent to hospital for correction or reconstruction of traumas of earlier surgical intervention. Breast cancer is the most common cancer disease among Danish women. Since 1943 the number of new instances of breast cancer have been constantly increasing - at present with 2600 new instances a year, primarily among women at an age over 45. The treatment is surgical: mastectomy (approx. 75%) or tumor rectomy (approx. 25%). Most of the women receive radiotherapy or chemotherapy as aftercare. The actual choice of treatment and aftercare offered is based on a doctor's assessment of the tumour - its size, spreading and possibly metastasizing, level of anaplasy and oestrogenic reception. This assessment is carried out in accordance with the guidelines of the Danish Breast Cancer Cooperative Group. The women have often gone a long way through the health services system before we meet some of them in the plastic surgery ward for breast reconstruction. In the light of the amount of focus placed on body and health in our culture it is striking how rarely we as nurses discuss and describe the problems patients experience when they lose a part of their body or body identity. Also, it is striking how little Nordic litterature is available on the subject 'Body Loss and Body Identity'. Losing a breast Based on my practical nursing experience, I will place the focus of this article on the consequences to the individual patient of body loss and body changes - and on the importance to the individual patient of having the possibility of breast reconstruction. I have chosen to focus on women who are sent to hospital for reconstruction of a breast they have lost because of cancer. I have spoken with many of these women about what losing a breast meant to them, about their experiences, about reactions and support from relatives and friends, and about expectations and experiences in connection with breast reconstruction. Losing a breast is most often experienced as a major loss precisely in relation to the woman's identity and self esteem. As a breast operated patient recently told me: "I felt that an important part of me had died and that I lost a part of my femininity and my dignity. Believe me, I felt disabled!". Another patient has stopped going to the public swimming baths: "I can't stand the looks from others and the feeling of being amputated." Among the women who have a breast removed because of breast cancer only a minority have a breast reconstruction. Choice of breast reconstruction is a difficult decision Many of the women I have met in our ward found it was a very difficult process to decide whether or not they wanted a breast reconstruction. Many of them have felt very lonely in this process of decision without receiving very much information, understanding or support from the health services system. Also, many women fear that the wish for a breast reconstruction may be seen as a luxury, in particular in periods with cuts in health services budgets. Therefore, the woman often finds she has to provide a very rational explanation of her wish for a breast reconstruction even though her problem is concerned with experiences and feelings and often is felt to be a very private problem and often even tabooed. These problems are important since they are actual strains to women who are already strained by their loss. A difficult period The women share a number of experiences. Losing a breast has been hard on them. The fear of the disease, prognosis, treatment and aftercare has dominated their lives for long periods of time and they have felt sorrow, anger and bitterness of being struck by the disease. In addition to the fear of the disease and the prognosis the women have experienced physical and emotional problems in connection with the loss of their breast. Knowledge and understanding In our ward we are professional providers of physical care - and this type of care is evident and visible. However, psychological problems are less visible and they are not always sufficiently attended to as part of the care provided. In order to provide the best possible care for the patient in connection with breast reconstruction, the nurse must understand the problems of a breast operated woman. A specific knowledge about disease, treatment and aftercare must be supplemented with a knowledge and understanding covering the following areas: 1. what does losing a breast mean to a woman's experience of herself? 2. how is body and body experience connected with personal identity? 3. what sorrow and pain is connected with losing a part of your body? 4. what can a nurse do to provide sufficient care for the patient? Breast reconstruction - a demanding process Normally, breast reconstruction is based on one of these 2 methods: implant of a tissue expanding prothesis abdominal flap surgery. The choice of reconstruction method depends on, partly, the surgeon's assessment of what will lead to a good result and, partly, of the woman's wishes. Reconstruction is not begun until about 1 year after completion of breast cancer treatment and aftercare - and the breast reconstruction itself lasts for 1 year before the final result is achieved. The tissue expanding prothesis A good result with this method presupposes, firstly, that the breast musculature is intact. Secondly, a sufficient amount of tissue must be left after the mastectomy process to leave room for the prothesis. Finally, the scar and the subcutis must be flexible. The expander prothesis is an inflatable prothesis filled with salt water which is placed underneath the breast musculature. Through a subcutan valve the prothesis can be filled with up to 1000 milli-liters of salt water. This filling is an out-patient treatment over a period of 6-8 weeks and during this process the tissue is gradually expanded. After another 3-4 months the breast volume has been created and the tissue has been expanded. At this time the valve is removed together with a portion of the salt water in the prothesis so that the breast becomes naturally pendulous. Abdominal flap surgery Abdominal flap surgery may be a good alternative to a prothesis operation since the patient's own tissue - rather than an alien material - is used for reconstruction. However, this operation presupposes that the woman has a certain amount of body fat around the stomach. Tissue (scin, subcutis and muscle fibre) is moved from the abdomen to the breast region through abdominal flap surgery. The flap is 'fetched' at the lower part of the abdomen where scin, subcutis and one of the abdominal wall stretch muscles as well as the vessel stalk are made free. This flap is transported through a subcutan tunnel to the place where the breast has been removed. The flap origin at the abdomen is closed and the flap - retaining its blood supply - is shaped and stitched up as a breast. Reconstruction of areola and papilla The areola-papilla complex is reconstructed after approximately 6 months when the breast has been reconstructed and the tissue has settled. The areola is formed from a full skin transplant fetched either from areola at the oppposite breast or from the slightly dark inguinal skin. The papilla itself is formed out of local tissue. Later, the areola may be darkened through tatooing which is an out-patient treatment. In order to achieve a symmetrical result the opposite breast may be lifted or reduced in size through surgery. Is it worth the effort? It should be evident to the reader that the breast reconstruction process takes a long time and means heavy demands on the woman. Most of the women I have met in my nursing practice have expressed that it was worth the effort. They have achieved an improved quality in life and an improved self esteem through the renewed feeling of being a whole woman and possessing the outward visual symbol of womanhood. Body, body image and identity The norwegian psychologist Bertolt Grünfeld says about body image that it is: "the image we have of our own body, the way we subjectively experience it" (2, p. 3 - my translation). Our personal identity is connected with the mental views and images we have of ourselves as persons and the views and images we have of our own body. Changes of our body and our appearance entails changes of these mental views and images. The image of our body is a complex image since physical and psychological aspects cannot be separated. The body not only sends and receives signals - it also senses desire, aversion, temperatures, pain, touches etc. The body senses and 'remembers'. And, finally, we assign the body and parts of the body a symbolic significance (pure, impure, fertile, sexual, sinful). Body image The mental image of our body is very important to our personal worth. Our body images develop in the course of our lives. Our experience and view of our body image depends, partly, on the values and attitudes which has been brought on to us through care and up-bringing and, partly, on the culture we live in. "Under normal circumstances our body image is an integrated whole which reflects important aspect of the whole person. This is what we call 'ego-integrity'. I am my body - and my body is me" (2, p. 13 - my translation). Our body is closely connected with strong feelings - feelings of love and hatred, desire and aversion. We experience that we are our body and that we are in control of our body. We have strong feelings concerning body appearance, functions and performance. These feelings are challenged when the body is altered. Body loss and identity Losing part of the body is a most traumatic experience. "Illness is a threat to a person's experience of integrity and entirety. This a particularly notable in connection with surgical intervention resulting in body alterations. You lose something." (2, p. 13 - my translation) You lose a part of yourself and you react with a feeling of sorrow. Losing a breast means that an important part of the body dies - that part of yourself disappears. At the same time you lose what - in our culture - is the symbol of womanhood, sexuality and motherhood. Furthermore, the cancer disease is a threat of losing life. Thus, many types of losses and threats are connected with losing a breast because of breast cancer. The ability to cope with the loss depends on several factors including: - how large a portion of the breast was removed (visibility)? - how much did the breast mean to the woman? - how does the woman interpret her disease (guilt, punishment etc.)? - how do family and friends react? The reaction and attitudes of a husband or partner may have an strong impact on the woman's self esteem and ability to cope with the loss. Loss and the pain of losing Everybody experience a series of losses in their lifetime. Everybody lose somebody or something they are closely attached to - somebody or something which has an impact on their lives and their experience of the value of life. Serious losses include death, divorce, loss of mobility, loss of a part of the body - or having a life threathening disease. When a woman has breast cancer she faces a life threatening disease and, thus, she is confronted with her own death. In addition to the diagnosis, she is normally confronted with the fact that her breast has to be removed. In most cases such conditions of life are so shaking that they lead to deep sorrow and a condition of crisis with experiences of unreality, chaos and strong often contradictory feelings. In their book "The necessary pain" (Danish: "Den nødvendige smerte") Davidsen-Nielsen/Leick (3) discuss general characteristics of working with sorrow following a loss and their work is immediately applicable to the loss and sorrow experienced by women with breast cancer who have lost a breast. Davidsen-Nielsen/Leick splits up the typical sorrow process in 3 major phases: a liberation from the past through realization of the impact of the loss in all its aspects a re-establishment of a present everyday life which contains both what is left and some necessary changes an experience of having a future with new opportunities and new roads ahead (3, p. 21 - my translation). Getting through these phases demands a long time of often hard work on the part of the person experiencing sorrow. Davidsen-Nielsen/Leick (3) divides this work into 4 tasks. Each task has to be solved at several levels in the process of working with sorrow before a new balanced life can be obtained: 1. task: realizing the loss intellectually and emotionally 2. task: living through the feelings of sorrow 3. task: acquiring new skills 4. task: re-investing emotional energy. The model may contribute to the understanding of the scope and the elements of working with sorrow and to structuring professional assistance in the process. The process of working with sorrow may be hampered or postponed but if it is neglected the consequence may be a life out of balance with psychological and physical sorrow reactions. As a background for selecting and initiating nursing actions in relation to the breast operated woman the nurse must: speak with the woman and her relatives about her experiences in connection with losing a breast and what this means to her in her everyday life (making feelings explicit) speak with the woman about her future. What has to be done now and what does she think about her future? speak with the woman about her experience of body alterations: physical and psychological experiences, expectations and ways of building up new energy. Women's experiences Physical experiences The physical experiences of losing a breast is typically described by women as a feeling of asymmetry: slanting and muscle tension. Some women mention that the movable prothesis they receive after the operation causes inconvenience. This type of prothesis does not weigh the same as the other breast and the prothesis can fall out from the bra during physical activity, so they tend to limit their physical activity reducing sports activities etc. Other women find that limitations concerning choice of clothing is a problem. It takes a long time to get used to the loss of a breast. K.M.Spannow says: "What is reflected in the mirror is not just the asymmetrical image. It is also the feeling that something is wrong with your body. You wake up from your sleep if you turn over on the operated side of the chest because resting directly on the ribs is an unusual feeling." (4, p. 7 - my translation). Emotional experiences Many women tell about very strong emotional experiences concerning loss of femininity, feeling of amputation, fear of seeing themselves in the mirror, feeling of not being sexually attractive, loss of self esteem and shyness of their own body. "I lost my breast which was a part of myself and my femininity - now I feel amputated and not a whole woman" "I feel my body was injured and I became an illustration of my disease" "I felt I died a little - I was afraid to see myself in the mirror where I was permanently reminded of my disease". Network Most women express that they have met understanding and support from their relatives and friends and that this has been very important. Some women, however, experience that relatives and friends may, at some point, get more or less fed up or simply stay away so the woman gets isolated. Lack of knowledge Many women tell that a major problem for them has been lack of knowledge. They have not been sufficiently informed that breast reconstruction takes a long time and involves going to hospital several times. They have also not been informed about the amount of physical pain involved. In some cases they have not been informed of what they may realistically expect from the result of breast reconstruction which in some cases leads to unrealistic expectations. In general, women are not informed of the possibility of breast reconstruction neither in the surgery ward where the mastectomy takes place nor later in the process unless they explicitly ask about the possibilities. And at some point many women have thought they would have to pay for the operation at a private clinic. Reactions at the time of going to hospital When women go to hospital to have a breast reconstruction they react in very different ways. Some of them look forward to the result. Others are afraid of the operation or afraid that the cancer disease will flare up again. Some women experience deja vu of the time when they had their breast removed. Some women experience crisis reactions, they cry, get angry, cannot cope with the situation or they have nightmares. These reactions have sometimes been difficult to understand to some of the women as well as to their relatives. Some women are worried that their wish for a breast reconstruction may be seen by others as a luxury wish and several women tell about feelings of guilt and shame because they want to have an operation and thus demand resources. These worries are increased by the lack of self esteem many women feel at this point. Openness The feeling of guilt and shame has to do with the fact that we - in our culture - exhibit and focus on having a healthy, complete and beautiful body. Serious disease, death, body losses and sexual sensuality are still tabooed issues. An increased openness and freedom in these areas is necessary to change the ordinary oppression, women's self-oppression and experience of guilt and shame. Breast reconstruction does not free a woman from working with herself. But information about the possibility of reconstruction should be obligatory to the health services system - and to some women this may make a difficult period of their lives less traumatic. The nurse's knowledge and self-knowledge As nurses we must be aware that a woman's self esteem, her self conscience and the relationship to her relatives and friends are effected when she loses a breast. This awareness is important so that we do not - out of ignorance - worsen this situation. We have to know that the woman will immediately notice if we are uncomfortable with body losses - she will notice whether we see, hear and touch with or without reluctance and inhibitation. Feelings of guilt and shame in connection with losing a breast and wishing to have a reconstruction may stem from body and sensuality being tabooed - and therefore oppressed - issues in our culture. We must be aware that patients as well as professional health care personnel all carry this culture with them. Therefore the nurse must have an open-minded and tolerant attitude as an element of a professional support and care for this group of women. This calls for not only professional knowledge and competence but also a personal knowledge and control of our own attitudes and actions. Psychological care The basis for nursing care must be to meet the woman where she is - in a situation of balance or imbalance. The challenge for nurses is to realize and fully accept that the woman feels sorrow and reacts to her body loss - also in connection with breast reconstruction. Care for a patient with crisis and sorrow reactions in connection with breast reconstruction is not very different from care for any other patient with a crisis and sorrow reaction. Care and support consists of being present, being open and honest, touching, putting one's arm around the patient, offering a handkerchief, helping the woman to become aware of her own thoughts and feelings - and possibly help her structuring the feeling of chaos in life and reduce any tendencies to distort realities. The structured model for professional handling of sorrow mentioned above may contribute with insight as well as guidelines for action. The nurse cannot take over the patient's work with her sorrow but she may be able to make this work easier through professional help at the right moment. The nurse may help the woman to describe explicitly the losses she has experienced. For women who have not lived through the feelings of sorrow - and who seem to evade doing so - the nurse may help by gently asking specific and confronting questions about the impact on the woman of having lost a breast, about the reasons for wanting a breast reconstruction and whether she has had anybody with whom to share her thoughts and experiences, her pain and sorrow. In cases where the woman's situation calls for it, the nurse may establish contact to a psychologist (and in Denmark also to the organization 'Kraeftens Bekaempelse' ('Fighting Cancer')). In connection with support from relatives and friends (tasks 2 and 3 in Davidsen-Nielsen/Leick's model) the nurse may have a role as a mediator. It may be difficult for the woman and for her relatives and friends to understand that the process of handling and working with sorrow takes such a long time. The nurse's knowledge may help the woman as well as her relatives and friends realize that her reaction is not unusual. The nurse may assist in explaining this to the woman's relatives and friends. Care and information The nurse has a major information task when preparing a woman for breast reconstruction. As described above women often have insufficient knowledge of the course, the duration and the result of the surgical intervention - as well as physical and psychological effects. When a woman is taken to hospital to have her breast removed and she is informed about buying movable breast protheses, she ought also to be informed about the possibility of breast reconstruction at a later stage. She does not have to make a decision at this stage - but she should have information which may become relevant later. Likewise, women who are going to have a breast reconstruction should be informed thoroughly - at the examination in the plastic surgery out-patient's clinic - about the whole process including going to hospital several times as well as receiving out-patient care. Also they should be informed of the duration of breast reconstruction treatment. The women should be prepared that the intervention entails pain and that complications may occur - and that there is no guarantee of a perfect result. To offer the woman qualified care there should be procedures in the surgical ward which secures that the patient meets an expert nurse in this area already at the out-patient pre-examination. (In Denmark a reference to the self-help groups of 'Kraeftens Bekaempelse' may be helpful to the woman. Establishing contact to other women who have gone through breast reconstruction may be a future task for 'Kraeftens Bekaempelse' - possibly in co-operation with the hospital). The nurse should provide knowledge about sorrow and crisis - and its typical duration - to the woman and her relatives and friends. Receiving support is important to the woman. Therefore it is necessary for her to have somebody with sufficient knowledge and commitment to provide the neccessary support for the necessary period of time. Improved quality of life When the women are taken to hospital for the final reconstruction most of them are happy about their new breast. They signal far more physical well-being and an improved self esteem when compared to the first period at hospital. The courses and results of breast reconstructions differ - more or less complicated, more or less perfect. But in my experience breast reconstruction mostly leads to satisfaction - and in most cases to improved self esteem and improved quality of life. A woman expressed it this way: "There is not a day when I don't think about and enjoy my recreated breast - and you cannot imagine the joy I felt when I threw the movable prothesis in the bin". Literature (in Danish/Norwegian) (1) Andersen, Kirsti/Berthelsen, Anne/Fenger, Lis/Hvidberg, Jenny/Kopp, Kirsten/Zibrandtsen, Pieter (1990): Behandling og pleje af patienter med kræftsygdomme. Lærebog for sygeplejeelever, København, Nyt Nordisk Forlag. Arnold Busck, 98-101 og 132-142. (2) Grünfeld, Berthold (1985): "Kreft - Kroppsmutilering og seksualitet" - indlgæ ved Norsk Konference i Kreftsykepleie 1985, Oslo. Konferencenotat udleveret til konferencedeltagere. (3) Davidsen-Nielsen, Marianne/Leick, Nini (1994): Den nødvendige smerte, København, Munksgaard. (4) Spannow, Karen Ellen (1993): "Der skal to til et godt bryst", Sygeplejersken, 1993, nr. 5, 6-8 og 26.