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Survivorship

Online Communities: Reaching Out to Others from the Comfort of Your Home

Online communities and message boards are terrific options for patients with cancer and survivors to connect and chat with experts and other patients. Take a look at the role online communities serve for survivors in today’s digital world.
December 2017 Vol 3 No 6
Katie Brown, OPN-CG
Vice-President of Support and Survivorship
LUNGevity Foundation, North Richland Hills, Texas
Cervical cancer and stage 4 NASH survivor

Online communities can play an important role in your cancer experience and your survivorship. One of my top responsibilities at LUNGevity Foundation (www.LUNGevity.org), an online foundation focused on patients with cancer, is to create engaging communities for people who are affected by lung cancer, including patients, their caregivers, family members, and anyone else affected by lung cancer. Our many communities inform, educate, and support all those who are affected by lung cancer.

For a newly diagnosed patient, cancer-specific online communities can connect you to others who share an experience similar to yours. These connections may help to inform you about what to expect during treatment, provide tips on survivorship and practical advice related to your situation, as well as peer-to-peer emotional support.

Social Networking Online

Social networking sites, such as Facebook, can help you to “stay social” and feel less isolated if you become physically limited by your disease. Before the availability of online technology, a person with a debilitating illness might have felt isolated and lonely. Today, if a person is too ill to visit friends or go to dinner parties, that person can still connect to other people from the convenience of his or her home using a computer, tablet, or a mobile phone.

Facebook Groups

Facebook Groups is another type of online community that is growing in popularity. These are groups of specific Facebook members who share the same beliefs, likes, or life experiences, such as a specific illness. Facebook Groups can be a public or a private online space for people to connect with each other. One advantage of groups such as a Facebook Group is the convenience of having your social circle and your support group all within the same Facebook application.

Twitter

Twitter is another popular social site that is gaining in popularity with groups of people. People can follow other people, celebrities, and businesses. With a 280-character limit text called a “tweet,” you can tell the world how you are feeling, and read tweets from other people around the world.

Twitter users can search hashtags for subjects and topics to find others who share a similar interest. You can also participate in Twitter Chats to chat about things you find important. Healthcare providers, cancer experts, and patient advocates also use Twitter to connect with each other and raise awareness about their cause, 280 characters at a time.

Message Boards

One of the most popular types of online communities that patients and caregivers participate in are called “message boards.” There are several message board sites to choose from. Some message boards are broad in scope, whereas others are cancer-type specific for those affected by a specific cancer, such as breast or pancreatic cancer.

When I entered the world of lung cancer 15 years ago, there wasn’t anything online to support people who were affected by lung cancer. In 2002, I helped to develop the first lung cancer message board, called the Lung Cancer Support Community (LCSC). Today, the LCSC has more than 409,000 posts, and is a very active social platform.

Even with the creation of sites such as Facebook and Twitter, message boards such as LCSC remain very relevant, because every forum and every post is about the disease that affects those who visit that message board, and users can also choose to post their posts anonymously.

The LCSC also allows users to create their own lung cancer blog, connect with lung cancer experts, chat with others in real time, and learn about the latest lung cancer news and advocacy opportunities and events available for people affected by lung cancer. Test out a few online communities and message boards to see which one may be the right fit for you, and start connecting with an online community. If you are affected by lung cancer, we invite you to visit us at www.LUNGevity.org and join one of our many online communities there.

Patient Resources

CancerCompass Message Board
http://www.cancercompass.com/message-board.htm
Cancer Survivors Networks
https://csn.cancer.org/forum
LUNGevity Lung Cancer Support Community
http://www.lungevity.org/for-patients-caregivers/support-services/lung-cancer-support-community
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Last modified: March 9, 2018

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