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To describe the experience of adult women who survive diagnosis and treatment of localised breast cancer without recurrence for at least 3 years.
Multicase, comparative situational analysis using Schutz's interpretation of phenomenology as the theoretical framework.
Rural, suburban, and urban areas of northeast Connecticut, USA.
45 white women who survived breast cancer for at least 3 years with no evidence of recurrence or metastases. Age at diagnosis ranged from 29–75 years, and years of survival since diagnosis ranged from 3–31. 20 women were diagnosed before the age of 50 and 6 before the age of 40. More than half the women with mastectomies had bilateral breast cancers.
An in depth interview and a follow up interview were done with each participant in her home. A dialectic was formed in which emic (one person's perception of the experience) description was juxtaposed with etic (other people's perception of the same experience) description of breast cancer survival. Data saturation was achieved at 45 women.
Each of 10 major categories (advice, coping and support, diagnosis, life changes, health care providers, health habits, relationships, religion and spirituality, treatment options, and worry about health and recurrence) were analysed for recurring themes. Women were concerned about other women and offered proactive advice (get mammograms and do self breast exams). Advice to newly diagnosed women was not to be afraid, to learn all they could, and to actively seek and use the support of others. Comments about coping and support ranged between having palpable family support to feeling utterly alone. The initial reaction to the diagnosis was disbelief and a sense of doom. Most women reported positive life changes. Women saw nurses as supportive, caring, good listeners; surgeons were either wonderful or awful; and oncologists were positively perceived. Women reported that they had better eating habits and did more exercise, and proactively sought balance and relaxation in their lives. Relationships with friends and extended family were as important as those with the primary family, and many women found support in unexpected places. Most women reported feeling more spiritual and in tune with nature. Women who had mastectomies did so through personal choice, because they had no choice, or felt pressure from the surgeon. Those who had lumpectomies were more active in their treatment choice and sought second opinions. Most women did not worry about their health or their cancer returning.
Commonalities were found in the meanings, situations, and life experiences of women who survived breast cancer for at least 3 years.
The study by Thibodeau and MacRae uses phenomenological research to explore breast cancer survival from the patient's point of view.1, 2 Its reference point is the unique person, whose subjective experiences of illness and recovery should inform nurses' understandings of patient needs. Findings suggest that nurses need to listen carefully to women to understand the meaning that breast cancer has for them, be aware of available support networks, and refer women to other women with similar experiences.
Despite claiming to do so, the study does not deal with women in sociocultural time and space. Rather, time, place, and culture are collapsed to reinforce a metanarrative that constitutes people as the authors of their own life worlds.3 This has serious implications: the commonalities described may not apply to women from other cultural and social backgrounds.
Excerpts from women's stories are especially moving. That most survivors appear unconcerned about the recurrence of cancer, and say that they have found strength and liberation in overcoming their illness, is particularly remarkable. This finding may reflect an underlying assumption of the study: in focusing on survivors of breast cancer, the study is implicitly concerned with success stories, “a journey from fear, pain, and darkness into light, hope, and joy”, with no reference to, or comparison with, the stories of women who are dying of the disease.
An important paradox, which is not pursued, is present in the women's accounts. These suggest that their bodies became a contested site during treatment decision making, but that they were themselves implicated in the objectification of their breasts and scars. Further exploration of this may highlight processes of objectification and “managed silence” through which patients and nurses together neutralise the horror of cancer and its wounds.4
Sources of funding: Hartford Hospital Research Foundation; Connecticut Nurses Foundation; Sigma Theta Tau, Mu chapter, USA.
For article reprint: Professor J Thibodeau, University of Connecticut, Storrs, Connecticut 06269, USA. Fax +1 860 486 0001.