By Shirley Vanderbilt
Originally published in Massage & Bodywork magazine, August/September 2000.
Kate was 35 years old when she was diagnosed with stage two breast cancer in her left breast. A modified radical mastectomy was performed and the breast was gone forever. It was several weeks later when the emotional shock set in. She thought, “Oh, God, what did they do to me? Where is my breast? In the hospital trash? Is it in a jar of embalming fluid? What did it look like? Was it in pieces or chunks? Couldn’t I have taken it home and buried it?” She felt the need for closure with her loss. She wanted a mourning process with her breast.1
For Kate and many women like her who have survived the ravages of breast cancer, there is the immutable fact that a defining part of the body no longer exists — the part that our culture and society labels as “woman.” And with this loss comes the challenge of incorporating a new body image into their lives. It is an altered body image, but one which can still define them as “woman.” Some make this adjustment, some do not.
Altered Body Image
Breasts are a part of every woman’s identity. They contribute to her sexuality, her motherhood and her sisterhood with other women. Whether pendulous or demure, the breasts are there, identifying her as female. For breast cancer patients, disease brings not only the stress of confronting potential death, but also mutilation of the body for the sake of survival. The loss of any body part may be deemed tragic, but the loss of a breast, or both, cuts into the very core of the female image. According to the studies, many women move on with their lives, adjusting to their new reality and new body image. But for nearly a quarter of the women experiencing this loss, the psychological and psychosocial aspects of their altered form can be devastating.
Anecdotal reports and clinical assessments from the 1950s and ’60s focused on identifying the psychological impact of breast mutilation and the persistence of adjustment difficulties long into the survival years. During the 1970s, several studies identified depression as existing in “20 percent-30 percent of women in the first or second years following mastectomy.”2 In a 1983 study of cancer patients, Maguire (et al) reported that 22 percent of women with mastectomies experienced moderate to severe problems adjusting to their changed body image. Subjects in the study reported feeling like a freak or half a woman in describing their sense of mutilation. These women engaged in avoidance behaviors such as “removing mirrors, dressing and undressing in the dark, avoiding taking a bath and 9 percent of women completely avoided looking at their chest at all.”3
Hopwood and Maguire in 1988 described the problem as “not just a question of losing a body part but a real sense of permanent change to their remaining body.” The patient attempts to “dissociate the mutilated part, feeling it is alien, and avoid(s) contact with or sight of this area.” Thus the process becomes more than just a grieving for the lost body part. It enters into the realm of a total change of perception of the body and the self.4
While the studies quantify these women as a minority of breast cancer patients, psychotherapist Ronnie Kaye, herself a breast cancer survivor and counselor with the American Cancer Society, offered a different view. She noted that “some women are so secure in their self-image that the absence of one or both breasts doesn’t seem to shake them...these women are in the minority. After all, we live in a very breast-centered society.”5
For some women there may be a reluctance to share their true feelings regarding their loss, either through shame, guilt or discomfort with the subject. Once they are diagnosed with breast cancer, privacy regarding this sacred part of themselves is significantly diminished. Guilt can arise from conflict over bereavement for their breast and gratitude for their survival. It may be surmised that the gap in comfort level between confiding in a counselor and responding to a research interviewer could skew the percentages and account for the difference between anecdotal accounts and that of the research cited.
A Qualitative Study
Adjustment to breast cancer is an individual matter and as such it lends itself well to a qualitative study, such as the one conducted at the Institute of Cancer Research at the Royal Marsden Hospital in London. Researcher Mary Bredin instituted a two-phase project to explore the personal experiences of three women with breast loss. The first interview phase focused on the subjects’ body image issues. In the second phase, massage intervention was performed as a means to facilitate adjustment to the altered body image.
The results of this study indicated that at least for these women, body-centered therapy provided a new dimension of care in which experiences and feelings could be “talked about, touched on, and met in a way that went beyond words.”6
Bredin’s rationale for massage intervention was based on two concepts developed through her experience with breast cancer patients: body concept and body perception. The manner in which a woman describes her loss and the images she conjures up regarding her experience contribute to her body concept. The sensations and feelings she experiences physically within herself and in reaction to her body make up her body perception. In either case, the woman may be focused on negative aspects, as in describing her body as grotesque or sensing it as untouchable. According to Bredin, massage can both ease the patient’s emotional pain of loss and transcend the physical boundaries she is experiencing in regard to her mutilated body.7
The three women in the study (Jane, Sarah and Vicky) had been identified by their oncologist or breast care nurse as having a problem with their body image based on the following criteria: “1) showed signs of having significant problems in adapting to the loss of their breast, and 2) revealed that they were particularly distressed about their changed appearance.” The study included two, one-hour interviews and six massage sessions conducted by Bredin. An independent researcher administered the follow-up interviews on massage effects. Therapeutic intervention included a brief relaxation exercise, followed by massage to the feet, arms, face or back, according to the subject’s preference. The subjects were also given the option of talking for a short while after the session.8
Data compiled from the pre-massage interview focused on the women’s experience of their changed bodies, the effects of breast loss on self and the effects of breast loss on their social identity. Jane, describing her experience, said, “I suppose to an extent I feel deformed. That’s probably the best way to describe it...and your appearance has changed quite radically...” For three months, Sarah would not look at herself. By the fourth month, she had managed to look, but did not like what she saw. Vicky, who had undergone a double mastectomy, had less difficulty accepting her new body when she was dressed. “I think my scars are ugly,” she said. When she looked into the mirror, she felt grotesque, but with her clothes on she was no longer thinking about it.9
In regard to their sense of self, the women all agreed that they were now different. Sarah, speaking about her reflection in the mirror, stated, “I don’t like it. That’s not me anymore.” All three women expressed distress in their social interaction, feeling self-conscious and wanting to conceal their altered state.10
Can Massage Help?
In the Bredin study, all three women reported benefits from massage intervention. In addition to increased relaxation and improved sleep, there were significant changes in their behaviors and attitudes regarding their scarred bodies. Vicky had avoided touching her breast scars, but in her follow-up interview said, “...now it does not bother me. I cream them and massage them and no problem.” Perceiving her body as repulsive, Vicky thought no one would want to touch her. Massage offered her the validation of touch, as well as an opportunity to share her feelings and thoughts with the therapist.
Sarah’s avoidance of the mirror diminished and she was once again able to look at herself. Her prior discomfort had led her to conceal her breast from her partner and had disrupted their sexual relationship. During the treatment period, she resumed intimacy with her partner and even ventured to show her scar to a friend.11
Jane’s experience was quite different, as she had a “couple of weeks of feeling pretty grim.” Although given the choice of withdrawing from the sessions, she chose to continue and subsequently unfolded her feelings of grief regarding her cancer. While Bredin cautions about the possibility of massage opening up suppressed emotions and potential harm being done, she states that Jane’s continuation with the program allowed her to be “held physically and emotionally while she confronted feelings that had previously been too private and painful to reveal.”12
In concluding her report, Bredin notes that the current approach to assisting women in adjusting to their breast loss may in fact compound the problem and lead them to feel a need for continued concealment of their disfigurement. The simple solution of replacing the lost part with a prosthesis reinforces the necessity to conform to the normal, when in fact the patient knows all is not normal underneath. In addition, medical reassurances that breast loss has now made them disease-free can undermine the patient’s need to express anger and distress at their altered state. Bredin points out that although limited by its qualitative status and small sample group, this study highlights the call for further investigation into the use of massage as an effective intervention in post-mastectomy cases.13
A constant theme throughout the research and anecdotal material suggests there is a substantial portion of mastectomy patients who are reluctant to reveal their true thoughts about their altered body image. Nursing academic Hazel Colyer, in her article “Women’s Experience of Living with Cancer,” states, “I would posit that these disturbances of body image are caused by the enemy within (the cancer) and the enemy without (stigma); a combination of the clinical features of cancer and its stigmatizing effects on social identity. The cancer sufferer no longer conforms to her social stereotype and this alienates her from normal social relations.”14 It is this stigma, some suggest, that inhibits the patient from unveiling her disturbance. When life returns to “normal,” the breast cancer survivor is still faced with the loss of her symbol of womanhood. Bredin’s research suggests that body-oriented therapy can help to remove that stigma and open the door for the expression, within a safe and nurturing environment, of feelings of loss and alienation. It can provide the healing magic of touch where touch has been abandoned, and a new, positive view through the looking glass.