New published data from a large pan-European survey indicate that the majority of postmenopausal women with early breast cancer taking post-surgical endocrine therapy are not involved in making key decisions about their treatment, nor are they given sufficient information to make informed treatment choices that could affect their long-term outcome.
Although 96% of the women surveyed said their health provider was their main source of information, only one-quarter reported being told their risk of breast cancer recurrence, less than half were made aware of treatment options, and nearly one-third did not receive information about possible side effects, according to the results published in The Breast (available online in April; print edition expected in volume 16, 2007). In addition, 2 out of 5 women (41%) reported they were not at all involved in the decision to start adjuvant endocrine therapy.
The survey, part of The GAEA Initiative, involved 547 post-menopausal women with early breast cancer from nine European countries. It was designed to find out women's knowledge and understanding about adjuvant endocrine (hormone) therapy and their risk of recurrence, their involvement in treatment decision-making and their information and support needs.
"The survey results clearly indicate that the information needs of women receiving adjuvant endocrine therapy are not being met. These women told us that they want more information about treatments, especially side effects," said GAEA steering committee member Yvonne Wengstr'm, President of the European Oncology Nursing Society and from the Karolinska Institutet in Stockholm, Sweden. "Women rely on their health care professional for information, but they are not informed about why a particular treatment has been prescribed and the potential benefits and consequences of that therapy. It is alarming that many women were not even told about available treatment choices to reduce their risk of recurrence."
A woman's risk of breast cancer recurrence is a critical factor in weighing different treatments. Aromatase inhibitors, a newer class of endocrine drugs, have been shown to be significantly more effective than tamoxifen in reducing the chance of breast cancer coming back after surgery in postmenopausal women with hormone-sensitive early breast cancer.
Half of the women surveyed were being treated with tamoxifen, indicating that many women are not getting the most advanced treatment option. The survey results also revealed that older, less educated women or those without Internet access were less likely to receive information or be involved in decision making. In fact, 57% of older women (those over age 71) were not involved at all in their treatment decision, compared to 22% of younger women.