Women at high risk of ovarian cancer, who were advised to have fallopian tubes and ovaries removed, found that information available online about the precautionary procedure can cause more worry than comfort, Cardiff University researchers reported.
The study, “The double-edged sword of ovarian cancer information for women at increased risk who have previously taken part in screening,” was published in the journal ecancer.
Chances of developing ovarian cancer are only 2 percent for the general population, but many factors including gene mutations and family history can turn “chance” into risk and require pre-emptive management.
Factors include a woman’s relationship to a diagnosed family member (roughly 4% for women with one first-degree relative with OC) and number of diagnosed relatives (up to 14% for multiple relatives diagnosed). Mutations in the BRCA1 gene are associated with a 40–60 percent risk of ovarian cancer;mutations in the BRCA2 gene with a 10–30 percent risk.
According to researchers, the only absolute risk ridding strategy for women who have not been diagnosed with OC is salpingo-oophorectomy, which is the removal of healthy ovaries and fallopian tubes. But choosing such an aggressive path can be difficult – especially when risk screenings are not reliable or even available in some countries.
Researchers conducted qualitative interviews in eight women at OC risk who were screened and then advised to have the surgery. The women reported that seeking more information online increased feelings of worry and fear more than informing their decision.
“Sometimes, online information helped these women to increase their confidence when it came to talking to health professionals about ovarian cancer,” said Dr. Stephanie Smits of Cardiff University, in Wales, in the ecancer story. “It was also described negatively, with the women feeling that it might be best to avoid seeking information altogether. Information about ovarian cancer was perceived by these patients to be a double-edged sword.”
Smits maintains that women at high risk should seek guidance from doctors, other health professionals, and established ovarian cancer associations for information about screenings and preventive surgery. She also recommended websites with verified content, including those operated by government health agencies.
“Not all information on the internet is based on evidence, so people need to make sure they are looking at credible websites” Smits said.
Physicians can also help by advising how best to interpret online information and how to manage stress from information overload.
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