A study, thought to be the first of its kind, examines the quality of life for women with secondary or metastatic breast cancer and finds that more than a third are living needlessly with uncontrolled pain. The researchers point out that as medical advances improve the prognosis for patients with secondary breast cancer, there is a growing number of patients with metastatic breast cancer who are considered survivors rather than at end of life, and health care professionals need to be prepared for that.

The study, by Breast Cancer Care and the University of Southampton in the UK, was funded by Breast Cancer Campaign, and was published online recently in the Journal of Pain and Symptom Management.

The researchers analyzed data from questionnaires filled in by women attending two UK cancer centers and also who were invited to complete them online via the Breast Cancer Care Web site. 235 women with metastatic breast cancer (that is breast cancer that has spread) completed the questionnaires, which assessed quality of life and experience of care.

The results showed that:

  • 27% of women had shortness of breath.

  • 26% experienced nausea.

  • Women whose cancer had spread to their bones were more likely to be in pain, with 44% reporting significant pain.

  • There was little evidence of GP (8%) or local palliative care service (7%) involvement among the participants.

  • Given the choice, most women (62%) opted for their hospital consultant as the professional they would want to see on a regular basis.

  • More than half the women surveyed had been living with their secondary breast cancer for at least two years.

  • Half said they were dissatisfied with the care they were receiving.

The authors conclude:

“Despite improvements in treatment and survival of women with metastatic breast cancer, this group reports high symptom burden and dissatisfaction with elements of their care, indicating that alternative models of service delivery should be explored.”

Principal investigator Elizabeth Reed, Secondary Breast Cancer Research Nurse at Breast Cancer Care, told the press:

“Until now there has been little research into the quality of life of women living with secondary breast cancer outside of clinical trials. This study, which is the first of its kind, shows that women with secondary breast cancer have a range of complex, multidimensional needs that are not being met.”

Reed said no woman should have to live with pain that is controllable, or without the information or support they need to help them make decisions about their health.

Advances in medical treatment means those living with metastatic breast cancer are thought of as survivors, and not necessarily at the end of life.

“It is therefore vital that healthcare professionals are equipped with the knowledge and expertise they need to offer women with secondary breast cancer adequate symptom control and the medical and psychological support they need,” said Reed.

Written by Catharine Paddock PhD