Be Part of the Cancer Support Community
The Cancer Support Community, affiliated with The Wellness Center, has just announced and opened its breast cancer research project. I have been on the Advisory Board for this group, and am very excited about the work. As we all know, many women are doing well and living for years after breast cancer. We also know that there can be many medium and long-term side effects from our intensive treatments. For a while, there has been research about the various physical issues that can arise. For the first time, the emotional and psychosocial concerns are being considered.
The Cancer Support Community will be an extensive online support center as well as a place to learn about our needs. This is an opportunity to sign up online to be part of research that will be helpful to us all--while gathering helpful support and community. Here is a summary from MedPage:
Nonprofit Opens Online Breast Cancer Survivor Community
The nonprofit Cancer Support Community has launched the first online breast cancer survivor registry to monitor and conduct research on the emotional and social needs of disease survivors.
The Breast Cancer M.A.P. (Mind Affects the Physical) Project offers an online support community that includes 90-minute weekly, live, and professionally monitored discussion sessions, an open discussion Web forum, private personal contacts, video and written blogs, and an instant messaging feature allowing members to communicate in real time.
The sponsors hope to sign up at least 1,000 survivors to answer questions about their emotional and social needs outside of strictly medical environments, a prepared statement from the Cancer Support Community said. Prior research from the community has found that roughly 80% of breast cancer patients experience emotional distress, and that more than half felt their emotions were misunderstood.
These findings are supported by a number of evidence-based reports from the
Institute of Medicine that noted breast cancer survivors need an outlet for emotional and social support and understanding.
A study published in Cancer similarly found survival rates and psychological health improved in survivors who had emotional support.
Although breast cancer survival rates are the highest ever, the online community will allow patients the opportunity to manage the postoperative distress that can often go untreated.
"By listening to the shared experiences of breast cancer survivors, we can bridge gaps in knowledge and help inform new resources that support their most critical needs," said Joanne Buzaglo, PhD, senior director of research for the Research and Training Institute of the Cancer Support Community.
Interested survivors can find more information at the registry website