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

Stephanie Smits,Usha Menon,Jacky Boivin,Kate Brain

doi:10.3332/ecancer.2016.650

Stephanie Smits, Usha Menon + Show 2 more

Open Access

https://doi.org/10.3332/ecancer.2016.650

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Abstract

BackgroundWomen 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.MethodQualitative 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).ResultsFamilial 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.ConclusionWomen may be cautious about searching for information independently and in the absence of routine ovarian screening.Practice implicationsThought needs to be given to how best to create and disseminate credible ovarian cancer symptom information materials.

Highlights

Women with a gene mutation or family history that predisposes them to developing ovarian cancer (OC) require effective risk management strategies
The only effective OC risk management strategy is risk-reducing salpingo-oophorectomy (RRSO), which involves the pre-emptive removal of healthy ovaries and fallopian tubes [8]
Women at increased risk who decide to not have, or delay RRSO have to rely on early diagnosis through symptom awareness and presenting to primary care as soon as possible until effective screening strategies or chemoprevention becomes available

Summary

Introduction

Women with a gene mutation or family history that predisposes them to developing ovarian cancer (OC) require effective risk management strategies. The only effective OC risk management strategy is risk-reducing salpingo-oophorectomy (RRSO), which involves the pre-emptive removal of healthy ovaries and fallopian tubes [8] It is recommended after the age of 35 to high-risk women, which is challenging and difficult due to the loss of fertility, premature menopause, and associated quality-of-life issue and the need to undergo surgery [4, 9]. Women at increased risk who decide to not have, or delay RRSO have to rely on early diagnosis through symptom awareness and presenting to primary care as soon as possible until effective screening strategies or chemoprevention becomes available. 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. Practice implications: Thought needs to be given to how best to create and disseminate credible ovarian cancer symptom information materials

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