Friends in Need

Online social media promote connection, education, and support.

KAREN PATTERSON
PUBLISHED: MARCH 12, 2010
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
In the four years since she was diagnosed with stage 4 breast cancer, Lauren Groover has become a veteran of the medical battlefield.

Groover, 41, of Tupelo, Mis­sissippi, has been tested for BRCA gene mutations, which greatly increase the risk of breast and ovarian cancers. She’s participated in a study of Avastin (bevacizumab). She’s had Taxotere (docetaxel), FEC (5-fluorouracil, epirubicin, and cyclophosphamide), Xeloda (capecitabine), Abraxane (albumin-bound paclitaxel), and now Gemzar (gemcitabine). She’s used hormonal therapy, undergone tumor profiling to personalize her treatment, and suffered countless side effects. She’s endured bone metastases and recently had multiple tumors found on her liver. “I’m always in treatment of some type,” she says.

But Groover doesn’t fight alone. Besides her husband and twin teenage sons, she has a battalion of “sister” (and fellow) cancer survivors in her Facebook network who give and receive support.

Online, she monitors the health of her Facebook friends and shares her experience with others—frequently earlier-stage survivors fearful about some aspect of their own care. “I’m very happy to answer their questions,” Groover says.

The network, in turn, provides her support. When she recently posted news of her liver metastases, cards, e-mails, calls, and more streamed in. “It will make you cry,” she says of such outpourings. “Someone I’ve never even met sends me pajamas in the mail.”

In the realm of cancer support, social media websites like Facebook—which don’t just convey information but rely on user submissions and often foster relationships and interaction—are no less revolutionary than, say, X-rays were for medical imaging: The new technology has changed everything.

‘‘The opportunity to share resources, advice, and encouragement is something that can be incredibly empowering for a cancer patient.’’ 

Institutions like Dana-Farber Cancer Institute in Boston use social media to extend their reach in the community—for instance, by highlighting news and features on the institute’s website, says Carolyn Grantham, editor for dana-farber.org and espanol.dana-farber.org.

Besides followers or fans on Twitter and Facebook, Dana-Farber also has subscribers on YouTube, where spots range from vintage clips of celebrities touting its charity services to modern offerings, such as a top sarcoma physician explaining the disease and its treatment.

The institute also uses the interactive photography website Flickr to depict topics like a day in the life of the institute. “It’s another way of telling the story of what happens at Dana-Farber,” Grantham says.

She notes that restrictions like medical privacy laws can make it hard for health care institutions to connect via social media. “This is a way to do it that opens the door a little for people to connect with us.”

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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