Additionally, survey participants’ responses about treatment-related side effects, fears and anxieties, and the overall treatment experience suggest that healthcare professionals would benefit from more education.

The survey identified a host of challenges among women with MBC. A vast majority (94%) of respondents indicated that they had experienced weakness or fatigue while dealing with their disease; and nearly three-quarters (73%) said they had suffered from depression. Two-thirds (67%) noted they had experienced cognitive disorders associated with treatment (e.g., the so-called “chemo-brain” syndrome); and more than half (51%) complained of sexual dysfunction. When asked what has concerned them most about their treatment, nearly one-third of survey participants mentioned side effects (29%), fear that the treatment would not work (29%) and fear of the unknown (27%). Respondents noted that fatigue (30%) was the most impactful of side effects associated with standard treatment, followed by pain (21%) and hair loss (14%).

When the survey participants were asked who has given them the most support in dealing with MBC, family member (43%) was mentioned most often, followed by caregiver (16%), friend (14%), and medical oncologist (13%). Nearly as many respondents said they get most of their information about MBC from the Internet (39%) as from their doctors (42%), and 86 percent said Web-based MBC education and support materials would be most helpful to them.

The survey uncovered gaps in the treatment of MBC. Twenty-two percent expressed unhappiness with the care they have received for their disease; 73% were not offered entry into a clinical trial at diagnosis; 36% disagreed with the statement that women with MBC have a variety of treatment options available to them; 41% indicated that options were not clear to them at the time of diagnosis; and 52% said their healthcare provider does not offer a variety of treatment options or keep them informed of relevant drug approvals and clinical trials.

The survey also uncovered a strong desire for more patient advocacy groups to focus on MBC, as voiced by 82% of respondents. Nearly half of those polled (47%) expressed a wish for more monetary support in the area of MBC research to extend survival.

“Although the breast cancer advocacy communities have made great strides in developing and disseminating information about metastatic breast cancer, it is clear that we need to do a better job in these areas,” said Kirk. “The survey results should serve as a wake-up call to healthcare professionals and advocacy groups to step up and improve their communication and support to patients, caregivers, and families dealing with this devastating disease.”

Y-ME's mission is to ensure, through information, empowerment and peer support, that no one faces breast cancer alone. Y-ME does not raise money for research but is here today for those who can't wait for tomorrow's cure. Y-ME has the only 24-hour hotline staffed entirely by trained breast cancer survivors.

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