Symptoms reported by women in the United Kingdom Collaborative Trial of Ovarian Cancer Screening (UKCTOCS)

Background Research indicates that women with ovarian cancer experience an average of three to nine symptoms prior to diagnosis and that approximately one fifth have symptoms for six months or longer. As many as two-thirds of women with ovarian cancer report there were barriers in receiving a prompt diagnosis and nearly a third describe initially receiving a wrong diagnosis. Aim To pilot a prospective ovarian cancer symptoms questionnaire in the UKCTOCS cohort of postmenopausal women. Methods & Results A total of 1169 questionnaires were posted to UKCTOCS participants between May and September 2008. Preliminary data analysis was conducted using 690 questionnaires returned by 22.09.08 (59% response rate). Nearly a quarter (24%) were in the UKCTOCS control arm, 29% were participating in annual screening and 47% had been re-called for repeat tests due to an abnormality detected at annual screening. The mean number of symptoms was 5.6 for controls and those attending annual screening and 7.1 for respondents who were awaiting repeat test. The five most common symptoms across the groups were tiredness, fatigue or lack of energy (54%), back ache or pain (41%),excessive flatulence (40%), leg ache or pain (39%) and indigestion or heartburn (38%). There was a difference in the number of women who reported pelvic and other symptoms across the three groups. However, there was no difference between the groups for upper abdominal symptoms. Conclusion The difference in symptom reports between groups may have arisen due to respondents undergoing repeat testing being worried about being recalled for follow-up tests. The increased frequency of pelvic symptoms in the latter group may also stem from the higher prevalence of benign gynaecological conditions in this group. These findings will be further explored at the conclusion of the pilot phase. We hope the final phase of the research, a prospective study involving 100,000 UKCTOCS volunteers, will definitely identify type, severity, frequency and duration of symptoms that precede ovarian cancer diagnosis. This information may help reduce delays in ovarian cancer diagnosis