The double-edged sword of ovarian cancer information for women at increased risk who have previously taken part in screening

BACKGROUND: Women at increased risk who decide not to have, or to delay, risk-reducing salpingo-oophorectomy have to rely on early diagnosis through symptom awareness and presenting to primary care as soon as possible in the absence of screening. However, little is known about the acceptability to women of this strategy. We aimed to gain an in-depth understanding of women’s perceptions and previous experiences of ovarian cancer symptom management, and the influences on ovarian cancer awareness and anticipated symptom presentation. METHOD: Qualitative interviews were conducted with eight women at increased risk of ovarian cancer who had previously taken part in ovarian cancer screening and analysed using interpretative phenomenological analysis (IPA). RESULTS: Familial experience of ovarian cancer and perceived personal risk shaped women’s perceptions and behavioural responses to disease threat. Ovarian cancer information was perceived to be a double-edged sword, regarded as either useful for increasing knowledge and confidence in discussing symptom concerns with health professionals or to be avoided due to fears about cancer. CONCLUSION: Women may be cautious about searching for information independently and in the absence of routine ovarian screening. PRACTICE IMPLICATIONS: Thought needs to be given to how best to create and disseminate credible ovarian cancer symptom information materials.