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QUESTION: How do women with ovarian cancer experience cancer recurrence?DesignQualitative study.SettingToronto, Ontario, Canada.Participants18 women (age range 35-73 y) with ovarian cancer were identified through 2 major cancer centres and a local ovarian cancer support group.MethodsData 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.Main findings4 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.ConclusionWomen with ovarian cancer described waiting for recurrence, facing the diagnosis of recurrence, managing treatment related concerns, and attempting to regain control. [ABSTRACT FROM AUTHOR] |
