How Your Social Media Colon Cancer Support Group Might Be Hurting You

A colon cancer diagnosis can turn your whole world upside down. Suddenly, you're faced with an overwhelming amount of complex medical information to decipher and may not know what to do next or where to turn for advice.

When you feel overwhelmed, unsure, and alone, colon cancer groups on Facebook or other social media platforms can offer a space to share your experience, learn about your cancer, and feel a sense of connection. "A cancer diagnosis is unique. A colon cancer diagnosis is even more unique," says Megan Winter, DO, a hematologist and oncologist at Moffitt Cancer Center in Tampa, Florida. "Having a place where people can go and talk openly and freely about their experience is important."

Fortunately, there are ways to spot these common pitfalls and navigate peer support in ways that are beneficial to both your physical and mental health.

When you join a Facebook or other social media support group, you become part of a network of people who have been through surgery, radiation therapy, chemotherapy, and everything that comes with these treatments. "You're not just sharing emotional experiences, but you can also share tips and tricks for how to handle side effects or deal with other things that come up in the course of treatment," says Kaleena Chilcote, MD, the director of psycho-oncology at Cleveland Clinic.

Many social media groups don't have a moderator to check the posts and make sure they're accurate. "There's always the possibility that things being shared are not factual. They may not be based on what we call 'evidence-based medicine,'" Dr. Chilcote says.

Trying a therapy that's been recommended by other cancer patients online is risky. For one thing, it might not work. Sometimes even proven treatments that are effective for one person don't help others. An unproven cancer remedy could cause harmful side effects or interfere with the effectiveness of the evidence-based cancer treatment your doctor prescribed, Chilcote says.

Peer support has real advantages. You learn from people who've walked in your shoes, and who understand what you're going through. But it can also bring up a lot of anxiety, Dr. Winter says.

People use social media to share their positive moments and wins, but also to share their setbacks. "Someone is doing well, and all of a sudden they have a recurrence or they have a bad scan or they pass away,” says Boris Kiselev, MD, the chief of the section of psycho-oncology in the department of supportive oncology at Atrium Health Levine Cancer Institute in Charlotte, North Carolina. “That can be really hard if you're developing emotional connections with people." Seeing someone else go through severe side effects or a recurrence could trigger fears that your own cancer will progress.

Comparisons on social media are inevitable. Someone always has nicer clothes than you, takes better vacations, or has more friends.

Cancer support groups on social media pose some of the same problems. Seeing other members post about better treatment responses or fewer side effects than you've had may make you wonder if you — or your oncologist — is doing something wrong. Try to avoid falling into this "comparison trap."

Colon cancer is unique to each person. Even if you have the same cancer stage and treatment as someone else, their experience might be vastly different from yours. "Everybody's cancer can react very differently to the same treatment,” says Winter. “That's why treatment is an individualized process."

You can be more confident in the accuracy of information in a moderated social media group, especially if the moderator is trained and works in cancer care. They're more likely to share verified information and correct any misinformation that's posted, Dr. Kiselev says.

The Health Insurance Portability and Accountability Act (HIPAA) only protects the private health information you share with your doctors. "It doesn't say anything about sharing your information in a public place," says Kiselev. "Once it's on the internet, you don't have any control over it."

Here are a few things to consider before joining a colon cancer group on Facebook or other social platforms.

• Choose a group carefully. Think about what you want and need from a social media group, such as members in the same cancer stage as you. Read the descriptions of each group carefully. "Explore different resources and find one that is going to work best for you and support you in a way that makes you feel good," Winter says.
• Look for groups with a moderator. Check that the group is moderated and whether the moderator is a healthcare professional or a patient. Someone with medical experience is preferable. The moderator should establish community rules, protect users' privacy, and correct misinformation.

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• Don't accept social media advice as fact. While some treatments suggested in a group may be helpful, others could be dangerous. "You want to be really careful about not following recommendations without discussing them with your treatment team," Chilcote says.
• Be careful about what you share. Try not to include personally identifying information, such as your test results, birth date, location, and doctors' names. If you do want to share more about yourself and your cancer, consider using a pseudonym, Kiselev suggests.
• Recognize when a group isn't for you. While some people find these forums helpful, they're not for everyone. If a group isn't helping or it's making you feel worse, click “leave.” There are other support options. Your treatment team can point you to an in-person support group, peer-to-peer program, or mental health provider.