There are about 150,000 women in the United States living with advanced breast cancer. Musa Mayer and Susan E Grober, consultants for the study called Silent Voices: Women with Advanced (Metastatic) Breast Cancer Share Their Needs and Preferences for Information, Support and Practical Resources, say that over the years many of the women living with metastatic disease have expressed that they feel isolated, marginalized and alone.
The study found that nearly one-third of the women living with advanced breast cancer do not know where to access programs or medical treatments and emerging research. This study's finding is among several that could impact healthcare professionals and advocates who serve women living with Stage 4 disease.
Women in the study said that many of the support and information networks for breast cancer focus mostly on early-stage disease. The information on metastatic disease is often hard to find. There is not one website dedicated to bringing together the existing resources on advanced breast cancer.
A survey was given to the women in the study. Here are some of the findings:
- 75 percent of the women look for information about advanced breast cancer either daily or weekly.
- 69 percent said they find it helpful to listen or read about the experiences of other women living with advanced disease.
- 44 percent prefer online support groups while 38 percent prefer in-person groups.
- 57 percent of women with the lowest level of knowledge about their advanced breast cancer report feelings of anxiety, whereas only 19 percent of those with the highest level of knowledge report anxiety.