Women suffering from advanced or metastatic breast cancer (MBC) need as much psychological support as they do information regarding disease and treatment, reveals a new survey.
The survey was conducted by Y-ME National Breast Cancer Organization and involved a round 367 women with advanced breast cancer.
It also highlighted the increasing importance of the Internet as a source of information for the patients. It was disclosed that patients with MBC feel that healthcare professionals and patient advocates can effectively use the Internet.
"Despite the growing recognition of unmet medical, educational, and psychosocial needs among women with advanced breast cancer, there has been little information regarding which of these needs are most important to this patient population," said Margaret C. Kirk, CEO, Y-ME National Breast Cancer Organization.
She added: "This survey identifies psychosocial support as a high priority for women with metastatic breast cancer, one that should be pursued in tandem with the search for more effective and better-tolerated treatments."
Also, the responses of survey participants about treatment-related side effects, fears and anxieties, and the overall treatment experience suggested that more education would prove beneficial for healthcare professionals.
The survey highlighted the negative experiences with disease and treatment.
A host of challenges were identified among women with MBC.
It was indicated by a vast majority (94pct) of respondents that they had experienced weakness or fatigue while dealing with their disease; and almost three-quarters (73pct) said that they had suffered from depression.
It was noted that two-thirds (67pct) had experienced cognitive disorders associated with treatment (e.g., the so-called "chemo-brain" syndrome); and more than half (51pct) complained of sexual dysfunction.
Nearly one-third of survey participants mentioned side effects (29pct) when they were asked what has concerned them most about their treatment. Almost one-third (29pct) feared that the treatment would not work and 27pct feared of the unknown.
It was indicated by the respondents that fatigue (30pct) was the most impactful of side effects associated with standard treatment, followed by pain (21pct) and hair loss (14pct).
Participants when asked who has given them the most support in dealing with MBC, family member (43pct) was mentioned most often, followed by caregiver (16pct), friend (14pct), and medical oncologist (13pct).
Almost the same number of respondents said they get most of their information about MBC from the Internet (39pct) as from their doctors (42pct), and 86 percent said Web-based MBC education and support materials would be most helpful to them.
Many gaps in the treatment of MBC were disclosed through the survey.
Twenty-two percent expressed unhappiness with the care they have received for their disease; 73pct were not offered entry into a clinical trial at diagnosis; 36pct disagreed with the statement that women with MBC have a variety of treatment options available to them.
41pct indicated that options were not clear to them at the time of diagnosis; and 52pct said their healthcare provider does not offer a variety of treatment options or keep them informed of relevant drug approvals and clinical trials.
A strong desire was also uncovered for more patient advocacy groups to focus on MBC, as suggested by 82pct of respondents.
Almost half of those polled (47pct) showed a desire 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.
She added: "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."
The survey was presented at the 30th Annual San Antonio Breast Cancer Symposium.