Incidence and survival of gynecologic sarcomas in England.

OBJECTIVE: Gynecologic sarcomas account for approximately 3% to 4% of all gynecologic malignancies and are associated with poor outcomes compared with gynecologic carcinomas. The aim of this study is to report the incidence and survival rates of the main gynecologic sarcomas using national English cancer registration data. METHODS/MATERIALS: Records of gynecologic sarcomas diagnosed between 1985 and 2008 were extracted from the English National Cancer Data Repository. ICD-O3 morphology codes were used to assign tumor records to specific histologic subgroups. Incidence and 5-year relative survival rates were calculated. RESULTS: There were 5316 new cases of gynecologic sarcoma diagnosed in England between 1985 and 2008. Incidence rates increased significantly in the early 1990s, probably due to coding changes. Age-specific incidence rates were highest in women aged between 45 and 64 years. In the most recent period studied (2001-2008), incidence rates fluctuated between 8 and 9.6 per million. The most common anatomical site was the uterus (83% of all diagnoses), and the most common histologic diagnosis was leiomyosarcoma (52% of all diagnoses). Overall 5-year relative survival increased significantly between 1985-1989 and 2000-2004, from 34% to 48%. CONCLUSIONS: Gynecologic sarcoma incidence rates have varied little since 1993, whereas survival has improved significantly. These results are consistent with previously published small series and case studies, and provide a more complete picture of gynecologic sarcoma incidence and survival patterns in England.

'A giant mess'--making sense of complexity in the accounts of people with fibromyalgia.

OBJECTIVES: The diagnosis of fibromyalgia is based on self-report and indirect measures and thus is unavoidably influenced by patients' own understanding of their symptoms. In order to provide appropriate support for people with fibromyalgia, it is important to understand variation in patients' interpretations of their own symptoms. METHODS: Twenty people with fibromyalgia participated in email interviews exploring their experiences, history and diagnosis. Respondents answered a series of questions in their own time. Rich accounts were elicited. A hermeneutic phenomenological approach linked two stages of analysis. In the first instance, an in-depth, inductive analysis was developed around a subset of eight transcripts, using interpretative phenomenological analysis. The outcomes of this work were then used to inform a template analysis, which was applied to the remaining 12 transcripts, in order to extend and check the credibility of the in-depth analysis. RESULTS: Participants described enduring the course of a 'giant mess' of unpleasant symptoms, some of which were understood to be symptoms of fibromyalgia and some the interactive or parallel effects of comorbid illness. The respondents also demonstrated their considerable efforts at imposing order and sense on complexity and multiplicity, in terms of the instability of their symptoms. They expressed ambivalence towards diagnosis, doctors and medication, and we noted that each of the above areas appeared to come together to create a context of relational uncertainty, which undermined the security of connections to family, friends, colleagues and the workplace. CONCLUSIONS: Three key issues were discussed. First, there was not one overall symptom (e.g., pain) driving the unpleasantness of fibromyalgia; second, participants spent excessive time and energy trying to manage forces outside their control; third, because there is no definitive 'fibromyalgia experience', each diagnosis is unique, and our participants often appeared to be struggling to understand the course of their illness. Issues of stigma and legitimacy need to be considered carefully by health professionals in the context of the complex and uncertain experience of patients.