Women with ovarian cancer described waiting for recurrence, facing the diagnosis of recurrence, managing treatment related concerns, and attempting to regain control
QUESTION: How do women with ovarian cancer experience cancer recurrence?
18 women (age range 35–73 y) with ovarian cancer were identified through 2 major cancer centres and a local ovarian cancer support group.
Data were collected through 1 hour semistructured telephone interviews. Questions related to diagnosis and treatment, treatment decisions, acquisition of information and supportive care, effects of illness, and lifestyle changes. Interview data were transcribed verbatim and reviewed by the 3 authors, who identified themes arising from an inductively derived coding scheme.
4 main themes emerged: waiting for recurrence, facing the diagnosis of recurrence, managing treatment related concerns, and attempting to regain control. (1) Waiting for recurrence. Most women were aware of the risk of recurrence at the time of diagnosis, having learnt about survival rates from books, pamphlets, the internet, physicians, and other patients. Women had mixed feelings about knowing these statistics at a time when they were trying to deal with their cancer diagnosis and treatment. Some did not want to hear the statistics because they caused fear and anxiety, particularly regarding recurrence at follow up. However, foreknowledge of the possibility did not prepare women for news of a recurrence, which evoked feelings of being overwhelmed, devastated, and shocked. (2) Facing the diagnosis of recurrence. Some women had little time between initial diagnosis and recurrent disease, and thus little reprieve from ongoing treatment and side effects. Periods of watchful waiting and monitoring tumour markers such as CA-125 concentrations were difficult. Increasing CA-125 concentrations led to panic as they signalled cancer recurrence. (3) Managing treatment related concerns. Women perceived that care providers treated them differently when cancer recurred. They felt that communication became strained, which they interpreted to mean that they were without hope, and led to feelings of hopelessness. Women felt that information about treatment options was more difficult to obtain after recurrence, and that they had to push for further information. Some women changed physicians to obtain the care they desired, whereas others felt limited to specific treatments because of geography and lack of access to other physicians. Overall, women felt that few treatment options were available when cancer recurred, and that the focus changed from prolongation of life to symptom management. Oncology nurses were seen as a source of support and understanding. The need for involvement and control in treatment decisions increased as women completed first line treatment, faced recurrence, and improved their understanding of ovarian cancer and their bodies. To gain some control over their progressing disease, some women requested second opinions or complained to the hospital administration. (4) Attempting to regain control. With the recurrence of cancer, women were desperate to find a treatment to contain or delay tumour growth. 12 women used alternative therapies, such as therapeutic touch or herbal remedies, which helped them gain a sense of control over their disease.
Women with ovarian cancer described waiting for recurrence, facing the diagnosis of recurrence, managing treatment related concerns, and attempting to regain control.
- Kathleen Sodergren, RN, MSN, PhD
Howell et al report the findings of a qualitative study in 2 separate reports. The findings support existing literature on theoretical aspects of coping with threat, uncertainty, and chronicity.1 The authors indirectly refer to this scientific context, but do not explicitly place the findings of this study into such a framework. The common human responses the authors describe are consistent with the responses of people dealing with a chronic, life threatening illness.1
The authors used semistructured interviews, in which participants responded to specific questions without additional probing. The topics explored were clearly identified. Telephone interviews were appropriate because the authors determined there was no need to assess non-verbal behaviour to give cues for further questioning;2 this format also reduced inconvenience for participants. When researchers gather sensitive information, the anonymity of the telephone may facilitate collection of data.
18 women were interviewed to explore perceptions of living with ovarian cancer; 11 of these participants who had recurrences were interviewed to explore perceptions of cancer recurrence. This sample size is large for a qualitative study and would have resulted in a large amount of data for analysis. The authors presented fairly long quotations, although it is unclear whether these quotations represented responses from several participants or from one person.
The findings presented in these 2 reports can assist nurses by identifying themes to be addressed when caring for women with ovarian cancer. Participants reported that once they were diagnosed with a relapse, nurses treated them differently. In most cases, nurses realise that a relapse means that a patient cannot be cured and that treatment will be directed at control or palliation. Patients, on the other hand, usually still think in terms of cure. For nurses, this difference creates a dilemma. Nurses do not want to enter the physician’s realm by clarifying the issue for the patient, and many are uncomfortable when confronted with the inevitability of a patient’s death. Maintaining hope in patients requires that the “object” of hope change from “cure” to whatever a patient will hope for. This change in what is hoped for is reflected in the comments of participants in this study. By attending to these comments, nurses may gain insight into how they might communicate with patients in this situation.
Both reports clearly showed that having ovarian cancer affected every aspect of life. The diagnosis seemed to magnify areas of vulnerability, and women found they did not always have the resources to cope. Nursing interventions should prepare women to use their current means of coping and to expand coping skills. Nurses can help patients to reappraise their individual situations to better reflect reality. For example, for many women, ovarian cancer can best be regarded as a chronic illness that will extend over time, and which can, to some degree, be controlled. Through understanding predictable aspects of the disease and how to manage symptoms and side effects, women can gain an increased sense of personal control, which in turn may decrease distress. Nurses can also teach stress reduction techniques to help women control the anxiety that inevitably accompanies medical monitoring. Such techniques could also help in the management of pain, nausea, and other side effects of treatment.3 Nurses and patients can select specific outcomes collaboratively and work to achieve them by focusing on education, developing communication skills within the family, finding sources of personal and financial support, and rebuilding confidence and a sense of physical and emotional integrity.
Source of funding: Health Canada.
For correspondence: Dr M I Fitch, Psychosocial and Behavioral Research Unit, Toronto Sunnybrook Regional Cancer Centre, Toronto, Ontario, Canada.