Your Online Cancer Network

By Jen Singer
Reviewed by John D. Hainsworth, MD, and Roy S. Weiner, MD

About 10% of patients share their diagnoses on Facebook and 7% do so on Twitter, according to Minneapolis-based marketing and research firm Russell Herder.

Should you share your cancer battle via social media? Which types should you use? It all depends on your personality, says Robert Schmehr, manager of mind-body therapy at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City. “Using social media can be compared to walking into a party,” he says. “Some people will talk to everyone. Others will talk to just five people.” Here, how to find the right support for you:

Facebook
This behemoth social network—which lets you post messages and photos— isn’t just for college kids anymore. The fastest-growing group of Facebook users comprises adults ages 55 and older, according to Forbes.com.

Pros: You can vent about your cancer ordeal—and get support from pals near and far away—any time of day. You can also use Facebook to stay connected to friends you’ve made during treatment.

Facebook can be a lifesaver if there are no support groups in your area, which may be the case if you have a rare cancer. You can join an existing group for people with your type of cancer or create a new one.
Finally, you can use Facebook to “escape” from your illness. Says Terri Harder, “Facebook was a place where I could still be ‘normal,’” she says. “I could come home from radiation and watch Real Housewives with my Facebook friends and chat about the ridiculousness of it—just like I did before I had cancer.”
Cons: Friends’ banal posts can be an unwanted reminder of how cancer has changed your life. “All my old athletic friends were out accomplishing what I wanted to do but couldn’t,” says Elener, a cancer survivor who has written about her ordeal online. “I was very jealous. I had to stay off Facebook for my sanity.”

Also, your posts will appear on your friends’ Facebook pages, so you’ll need to share information carefully.

How to get the most from Facebook

  • Control your messages. If you don’t want to share your cancer news with all your Facebook friends, adjust your privacy settings to “custom” so that only certain groups of people can see your posts.
  • Connect with other cancer survivors. Sometimes it’s lonely being the only cancer patient in your circle of friends. Look for cancer-specific Facebook groups by typing the name of your disease into the search bar.
  • Block pop-up conversations. If you’re not in the mood to share your news through instant messaging, block it.

Twitter
This form of social media can offer emotional support one sentence at a time. Users broadcast their thoughts to friends and strangers who “follow” them in messages no longer than 140 characters. 

Pros: If you’re too tired to make phone calls or send emails, Twitter’s brief format may be right for you. Another advantage: You can carry on short conversations in real time, so Twitter can be useful for soliciting pre-chemo pep talks or sharing good news on the fly.

Even though you can’t say much in your posts, you can still get satisfying support. When Brandie Langer, 32, a breast cancer survivor and mom of three in Bartlett, IL, was told she’d need to remove her new breast implants so the radiation treatments could work better, she was devastated. She immediately turned to Twitter and wrote, “I can’t do this anymore. I quit. I’m broken. I’m done.” Brandie got dozens of responses within minutes from her Twitter followers. They wrote, Don’t give up and I’m praying for you. “My [Twitter followers] were propping me up,” she recalls.

Con: Unless you require your followers to be approved, anyone can read your messages.

How to get the most from Twitter

  • Protect your tweets. If you don’t want to share cancer-related news with strangers, adjust your privacy settings so that only people you approve can follow you and no one can share your posts.
  • Find other cancer patients. For instance, there’s a breast cancer group on Twitter that uses #bcsm (breast cancer social media) to communicate. You can set up a feed to follow just those messages.

Blogging
With a blog—a personal online journal—you can open up about your experience, and visitors can leave comments. You can also post photos and links to other blogs and websites.

Pros: Blogs are your own space, so you may feel more comfortable sharing the details of your experience there. Terri Harder, 41, a realtor in Minneapolis, was a survivor of chondrosarcoma, a cartilage cancer that returned in 2009 after 10 years in remission. She started a CaringBridge blog, which is designed to connect patients with family and friends. “On CaringBridge, I knew that visitors were there because they cared and wanted to read my story,” says Terri. Blogging can also help you connect with other cancer patients.  

Con: Unless you make the settings “invitation-only,” a blog can be read by anyone online.

 How to get the most from blogging

  • Choose a platform based on your tech proficiency. If you don’t have time to create a blog from scratch, consider using a website like CaringBridge.org. 
Published March 2014

  Every Day Made Easy

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