The double-edged sword of ovarian cancer information

Online information about ovarian cancer can cause as much worry as comfort for women at high risk of developing the disease, researchers in the School of Medicine have found.

For women at an increased risk of ovarian cancer but who haven’t yet developed the disease, the most effective option for managing their risk is to surgically remove their fallopian tubes and ovaries. However, when interviewed, the women faced with this choice reported that the information available online often increased feelings of worry and fear rather than better informing their choices – suggesting that patients’ independent research needs to be guided by their healthcare professionals.

“Sometimes, online information helped these women to increase their confidence when it came to talking to health professionals about ovarian cancer,” says study author Dr Stephanie Smits of the School of Medicine. “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.

“Not all information on the internet is based on evidence, so people need to make sure they are looking at credible websites.”

Dr Smits suggests that women at high risk of ovarian cancer should always seek guidance from their healthcare professionals and ovarian cancer charities for websites and resources that are helpful and reliable. “Doctors need to help in the search for high quality information, and management of anxiety that information might cause,” she says.

She noted that websites with monitored content, such as NHS Choices, are good places to start the independent research process.

Support for this argument comes from low patient awareness about ovarian cancer, including lack of knowledge about the effectiveness of current screening options, and confusion over ovarian cancer symptoms.

Ovarian cancer was once described as ‘the silent killer’ but this has been discounted over the years due to the increased understanding that it does indeed have symptoms.

It’s clear that increased awareness of symptoms and access to reliable information have an important role to play in improving outcomes for women with ovarian cancer.

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