Comfort in Community

Social media provides a welcome haven for cancer survivors.

By Diana Price

When Melanie Erickson was diagnosed with thyroid cancer in March 2009, the then-27-year-old from Calgary, Alberta, in Canada turned to the Internet for information and support. She joined several thyroid cancer support groups on Facebook and on ThyCa (http://thyca.org, the Thyroid Cancer Survivors’ Association). The information and the community were invaluable, she says: “I found it a convenient forum to ask questions as well as to talk with other cancer patients. I also loved the fact that if I couldn’t sleep, I could talk with other people around the world who were going through the same thing.”

Melanie’s experience is increasingly common, as cancer patients seek information about their diagnosis and support online. In fact, according to a recent survey conducted by the Pew Research Center and the American Life Project, 61 percent of American adults turn to the Internet for health information.[1] The study’s authors speculate that, with the increased use of wireless devices (such as phones), this number is bound to continue to rise.

What Are Social Media?

A growing draw for cancer patients and their loved ones is the array of online communities available through social media. Social media generally refers to Web sites that are driven by conversation and participation, whereas traditional media provide content but are not interactive. Facebook, Twitter, MySpace, blogging, and online chat rooms and forums—all are examples of social media. Within these various outlets, disease-specific Web sites, blogs, and social networks have gathered a large following for the information and the networking opportunities they provide.

Find Your Niche

For survivors and others interested in seeking education and support online, it’s good to know that today’s social media landscape is diverse. Whether you want a general discussion of cancer and related issues; to discuss specific, detailed information about your type of cancer; to share your journey publicly through a blog; or to keep abreast of breaking news about treatment options, you will no doubt find many resources online.

Welcome to a New Community

Patients and loved ones will have another option this spring, when Omni Health Media, publisher of Women&Cancer magazine, launches CancerConnect.com, a new online community for health information seekers. Charles Weaver, MD, executive editor of Women&Cancer, says that the decision to provide a community for readers is a natural extension of the magazine’s reach. “We repeatedly hear from our readers that they want to connect with others who are experiencing a similar journey. Women&Cancer wants to be part of the support network—which also ideally includes the medical team and family and friends.”

Alana Brody, vice president of social media for CancerConnect.com, says that the goal of the new site is to provide “a robust resource for anyone who has an interest in staying informed about advances in the diagnosis and the treatment of cancer.” By allowing people to gain and share information, Brody says, CancerConnect.com will provide “a warm, welcoming place that encourages members to visit daily, or more often, for updates and actionable information that will empower them to be strong advocates for their healthcare or the care of their loved one.”

Learn, Share, and Find Support

The evolution of social media—and the thriving cancer communities that are a part of that growth—has created welcome, additional resources for patients and loved ones. The variety of online communities, the wealth of information available, and the opportunity for connection—all reflect the demand for these resources among the cancer community.

My Story

Three cancer survivors share how Internet resources and social media shaped their cancer journey.

Shaundra Hall, 39

Arizona

When cervical cancer survivor Shaundra Hall found the Web site of the National Cervical Cancer Coalition (NCCC), she was elated. “I signed up immediately and felt, Aha! These women know exactly what I’m going through,” Shaundra says. She quickly began to post questions and, after a time, to answer questions posted by others, too. “I remember quite distinctly what an empowering feeling it was to be able to help a newly diagnosed patient navigate through all the questions and the fear that I had gone through years before, when I didn’t have any support. No one in my family or friends or immediate community could relate to my situation, but these women from all over the country could! It was amazing. It still is.” Now 10 years in remission, Shaundra continues to visit the NCCC online community and also blogs about different challenges she has experienced post-treatment. “The biggest benefit for me,” she says of her decision to reach out online, “is learning about cervical cancer prevention, education, and treatment from clinicians, researchers, patients, and others from all over the world who have a vested interest in cancer prevention and treatment.”

Rebecca Fisher, 29

Pennsylvania

Within two weeks in March 2008, Rebecca Fisher got the best of news and the worst of news. First she found out she was pregnant. Then she was diagnosed with cancer. The period that followed, as she made decisions about her pregnancy and treatment, was difficult and confusing. She dealt with often-conflicting information from different doctors, and she worried about how treatment would affect her pregnancy. It was at this point, she says, that a good friend told her about several great Web sites and online support groups—including the Pregnant with Cancer Network—that helped her immensely throughout her journey. “I kept thinking, I can’t do this,” Rebecca says; but as she found support and information online and heard from other women who were dealing with the same issues and making it through, she was encouraged. “I found out I wasn’t alone and that [my situation] was a lot more common than I thought.” Now finished with treatment and enjoying life as a busy mom, Rebecca encourages other women to reach out online: “Keep reading, keep searching,” she says, “and follow up and contact people. They’ve been through the same thing, and it will make it easier.”

Mel Majoros, 40

Michigan

Mel Majoros was diagnosed with breast cancer in September 2007. Shortly thereafter she found online support through Breastcancer.org and other similar sites and found that sharing her experience and asking questions of other survivors was helpful and convenient. “It was easy to discuss things when [I was in my] comfort zone (like in my pajamas on the computer) and to talk about personal things, whereas in a live group therapy session I may have been more uncomfortable.” In addition to visiting online chat rooms and gathering information, Mel began to blog about her experience. She still blogs today (www.thecancerwarrior.blogspot.com), sharing experiences about survivorship. “I started to write because it was cathartic for me to get out what was happening to me,” Mel says, “and still do write about things that happen to me. I think survivorship is a subject that is not covered as much as treatments are.” Mel also uses Facebook quite a bit and enjoys the community she has found there. “It connects me with other survivors, and I can get advice and tips from them about dealing with survivorship. Other survivors contact me as well about treatments, support, and other issues dealing with cancer.”

Reference:


[1]. The Social Life of Health Information California HealthCare Foundation Web site. Available at: http://www.chcf.org/topics/view.cfm?itemID=133977. Accessed December 16, 2009.