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Finding a Cancer Community Online

Read Time: 4 minutes

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It can be easy to feel alone while coping with cancer. Having a support system can make all the difference. Finding a community of people online who know how you feel and understand what you are going through can help. 

How can social media help when you have cancer?

Joining an online community can make a big difference in the lives of cancer patients. Online support groups can help those with rare cancers gain insight from others with the same diagnosis, even when they are separated by distance.

”Patients with cancer find that, often, those around them are very supportive and loving, but simply don’t know what it is really like to have cancer,” says Jennifer Pannunzio, LCSW, a social worker at Huntsman Cancer Institute.

Social media helps fill this gap by connecting people with cancer to others and giving them a place to share emotions honestly, she explains.

“When cancer patients begin this new journey, it can be difficult to navigate the many thoughts, feelings, and emotions that become part of this new reality. Often, patients will say that connecting with others through social media can allow them to better recognize those real emotions and be able to express them in a safe and objective space. On the other hand, connecting through social media doesn’t have to mean always sharing your journey. Rather, a patient can also quietly learn from what others share,” Pannunzio says.

How do online cancer support groups benefit young people?

Facing cancer can feel especially isolating for adolescents and young adults who are navigating medical appointments while friends are completing school, choosing careers, and starting families.

Social media can serve as a virtual support group during these times. As the Huntsman-Intermountain Adolescent and Young Adult (HIAYA) program coordinator, Karlie Allen, MS, CCLS has seen young adult patients share information, ask questions, and encourage each other through social media posts, stories, and comments.

In addition to connecting through individual social media accounts, young adult patients can share their stories at art nights and writing workshops hosted by national cancer organizations.

“They may never actually meet, but they find support in each other, knowing that they are not alone in their feelings and experiences,” Allen says.

How can patients navigate misinformation online?

Social media can also be a place to find and share cancer information. When evaluating information shared in cancer support groups, it’s important to make sure that your community is pointing you toward trustworthy resources, Allen says. She reminds the young adults she works with to be wary of anything that sounds too good to be true.

People of any age need to know that harmful misinformation is common online. Data from a recent study by Skyler Johnson, MD, radiation oncologist and researcher at Huntsman Cancer Institute, showed that 33% of the most popular articles on social media about cancer treatment include inaccurate or misleading information.

“Misinformation can impact patients all across the cancer continuum including prevention, screening, diagnosis, treatment, and survivorship,” Johnson says, pointing out that even the most cautious readers can find it hard to distinguish accurate information from misinformation.

One of the best ways for people with cancer to safely navigate the information and advice found on social media is to share questions with their care team, Johnson says. His latest research focuses on strengthening communication between patients and health care providers to help reduce the effects of harmful information. 

Social workers, patient navigators, and health educators are available to help find reliable cancer information and online support communities, agrees Pannunzio. She encourages people to start by following well-known, trusted organizations and making use of resources like the G. Mitchell Morris Cancer Learning Center at Huntsman Cancer Institute and the at the 㽶Ƶ of Utah.

While social media is a valuable place to find advice, empathy, and mutual support, people with cancer should keep both its benefits and its drawbacks in mind, say Pannunzio and Allen. Making comparisons or expecting every cancer experience to be the same can easily lead to feeling discouraged or overwhelmed. Instead, remember that social media is simply another tool to use as you make health care decisions with your loved ones and care team.

“Each patient and situation is different, their story is not your story,” Allen says.

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