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Metastatic Patients Want Support, Information
By Heidi Mae Bratt
It’s hard to overestimate the power of having a shoulder to lean on. In fact, women with metastatic breast cancer value psychosocial support as highly as cutting edge information on medical treatments, according to a recent survey.
The Y-ME National Breast Cancer Organization polled 733 women diagnosed with metastatic disease on such issues as their state of mind, sources of support and side effects of treatment. Of the 474 who answered a question about the effects of their illness, 73 percent reported feeling depression, a problem that ranked only second to fatigue; 47 percent said they felt isolated. Asked what affected them most about their treatment, 29 percent experienced fear that treatment wouldn’t work; another 27 percent cited fear of the unknown.
From these responses, the organization concluded that women with metastatic breast cancer want more emotional tools to help them cope adequately with their disease. “The survey just validated what we hear on our hotline—that people are craving support and information,” says Karen Christensen Araujo, vice president of marketing and communications for Y-ME. Adds Christina Koenig, director of communications and media relations, “Psychosocial support means different things to different people. It could mean therapy, support groups, help from family and friends or all of those options.”
Communication with doctors was another major source of discontent. Forty-one percent of the 447 women who answered questions about their treatment felt that their options weren’t made clear to them at the time of their diagnosis, and 52 percent said their health care provider doesn’t offer them a variety of treatment options or let them know about drug approvals or clinical trials.
The women surveyed also said they wanted more information available to them online. An overwhelming majority of them—86 percent—said that Web-based metastatic breast cancer education materials would be helpful. Y-ME CEO Margaret C. Kirk has said these results should be a “wake-up call” for health care professionals to offer more support and education to patients and their families.