From OncoLog, October 2012, Vol. 57, No. 10
House Call: Online Cancer Support Networks
Sometimes you need more than a friend—you need a friend who understands exactly what you’re going through. This can be especially true if you or someone close to you has cancer. Even if you have plenty of supportive family members and friends, you may feel as though not everyone “gets it.”
A fast way to find people who can relate to your experience with cancer is through an online social network for people who have experienced cancer. Online networks such as Cancer Survivors Network, I Had Cancer, and Know Cancer can help point you to people in situations similar to your own, whether you’re facing a mastectomy or dealing with an infection after a stem cell transplant. Whether your remission is on the horizon, out of reach, already attained, or uncertain, you can often find someone else in the same boat.
Some networks are for people with a certain type of cancer (e.g., Colon Club, Leukemia and Lymphoma Society), and others target specific demographic groups such as young adults (e.g., Stupid Cancer, Planet Cancer).
Many cancer communities not only link people but also promote discussion. For example, The Cancer Forums has an array of discussion threads for current and former patients and caregivers to share anecdotes and useful links on topics such as specific cancer types, pain, clinical trials, nutrition, and finances. In addition to a survivor message board, the Anderson Network hosts weekly online chats on cancer treatment and related topics with experts from The University of Texas MD Anderson Cancer Center. The Living Room on the Cancer Support Community Web site offers a variety of chat rooms and discussion groups. Because these sites attract members from all around the world, you’re likely to find someone online at any time.
In addition, you can follow the ongoing narratives of other cancer survivors or begin a story of your own through blogs. Many cancer patients maintain blogs over the course of their illnesses; visit Blog for a Cure to find thousands of cancer blogs organized by cancer type, disease stage, and geographic location.
Another archive of personal narratives about cancer is the Voices of Survivors Web site, which collects videos of cancer survivors talking about their experiences and writings by survivors about the idea of survival. Some people opt for simpler means of sharing updates, such as Facebook or Tumblr.
But not all social media are for sharing the details of your life with people you’ve never met before. To keep only specific people in the loop, you can make your own private Web page for publishing updates, such as written entries and photos, while letting readers post words of encouragement. One such service, CaringBridge, includes a planner to help coordinate care and various tasks between supporters. Similarly, the Cancer Support Community site has an area where you can create a personal Web page with sections for updates, a calendar, links for learning about your specific disease, requests for financial help, and inspirational photos and quotes.
Of course, there are ways to connect that are more direct than using a computer. For example, the Anderson Network Telephone Support Line (800-345-6324 or 713-792-2553) has a database of around 2,000 survivors and caregivers who are ready to talk. Call the line, and volunteers may be able to link you with a survivor who has gone through treatments or experiences similar to yours. This service is available in English and Spanish, as many survivors in the network are bilingual or speak Spanish only. The survivors who connect through this service are proof that intimidating situations are not hopeless.
A glimmer of hope or a word of encouragement can make a big difference when you’re fighting cancer. Online communities, forums, blogs, and other media can be valuable resources; however, remember that any advice you get on the Internet cannot replace a visit with your doctor. You should consult your health care team before making health decisions.
Social networks can empower you and extend your community, making it easier for you to discover useful information and to remember that you’re not alone.
– S. Bronson
For more information, talk to your physician; contact the Anderson Network at firstname.lastname@example.org, www.facebook.com/AndersonNetwork, or twitter.com/andersonnetwork; visit www.mdanderson.org; and call askMDAnderson at 877-632-6789.