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How Social Media Helps AYA Cancer Patients Find Support

Being diagnosed with cancer is less common in adolescents or young adults (AYA) than in young children or older adults. AYA patients often report that when they look around their treatment center waiting room, or even at their local patient support group, they tend to see patients who are half or twice their age. . This experience can lead to feelings of isolation, anxiety and depression.

COVID-19 quarantine mandates heightened these emotions by forcing AYA patients, an already underrepresented population within the cancer community, into physical isolation, cutting them off from the few resources that were available to them. This lack of peer support has led many AYAs to resort to other means of connecting with each other, such as social media.

Over the past decade there has been a significant increase in the use of social media. Apps like Facebook, Instagram and TikTok have continued to garner attention over the years, but during the pandemic these platforms have become even more important. Many people have turned to these platforms to stay connected when they couldn’t physically see family and friends. Social media apps have proven to be a place of community for many, especially for AYA patients facing a cancer diagnosis.

A recent study by Memorial Sloan Kettering Cancer Center aimed to identify key needs unique to AYAs throughout their cancer care experience. The study participants were between the ages of 15 and 39 and had been treated in the medical or pediatric oncology unit of MSKCC. Study results revealed that the most common theme among participants was feelings of social isolation and a desire to connect with peers throughout their care.1 One participant recounted that a friend, who had undergone treatment for leukemia in her 20s, was surprised to learn that another person her age had been diagnosed with the same condition. His experience had been so isolating. “You’re the only other person my age I’ve ever met who’s been through something like this,” she said. Unfortunately, this experience is incredibly common. There are very few treatment centers that offer dedicated resources, groups or programs for AYA patients. Additionally, at the time of a cancer diagnosis, AYA patients are typically at the point in their life cycle where they complete their education, become independent, engage in self-discovery, and start a career or family of their own. . Taking these steps is difficult under normal circumstances – when these changes are combined with the challenges of a cancer diagnosis, the result is a unique experience that can only be understood by other AYA patients in this position.

Social media has created a platform for AYAs taking on these specific challenges to share their experiences, emotions and perspectives in a way that has never been done before. Users have the opportunity to disclose their history of diagnosis, experiences with health care, side effects of treatment, survival, coping with their mortality, and many more topics. More importantly, by using hashtags such as #Cancer or #AYACancer on Twitter or #Cancertok on TikTok, AYA patients can attract other users to whom these hashtags might apply. As an AYA cancer patient, finding someone on social media who is going through something similar can greatly reduce feelings of isolation and reiterate that they are not alone.

Kasey Altman, a 26-year-old who was diagnosed with stage 4 rhapdomyosarcoma in 2020, has racked up 58.3k followers on TikTok since she decided to share her story. She earned her following by candidly publicizing her metastatic diagnosis, raising awareness of the unique challenges associated with AYA cancer, and engaging in advocacy efforts. Her posts highlight the ups and downs of treatment, managing side effects, and self-care tips for those newly diagnosed. Asked about the impact of social media on the AYA cancer community, Kasey said, “My main thoughts center around the atrocity of suffering in silence. TikTok makes it less lonely. It’s a community filled with fiercely loyal followers and people who seem to genuinely care about the well-being of others. This kind of support, empathy, and level of understanding is crucial for healthy coping.

In another study, the use of social media was explored in advanced cancer experiences in AYA patients. It was determined that digital technologies were used as the primary means of support. Study participants, aged 14 to 25, reported that social media and the use of video games allowed them to meet others facing similar challenges. It also allowed them to stay in touch with friends they might not be able to see in person following treatment.2 These types of connections are integral, especially for people who may be immunocompromised. Many AYAs receive their treatment in a hospital setting or even have to stay in hospital for weeks if they are recovering from a procedure like a stem cell transplant. AYAs also need the same access to support after completing treatment. A common misconception is that once treatment is over, life goes back to normal. However, this is far from the truth. Adapting to post-treatment is actually when connecting with peers is most important.

Julie Kramer, a 31-year-old woman who was diagnosed with stage 4 synovial sarcoma in 2014, said: “Instagram has become a huge resource for me during, but especially after, cancer to find other AYA patients who not only had the same cancer, but more importantly related to similar struggles that I have had and am currently having. I cannot express how helpful it is for my mental health and well-being to have the online cancer community as an outlet to meet, engage and speak out with other patients and survivors . Access to social media creates a pathway to connection, even if patients are physically alone during treatment or browsing after treatment.

Social media and public disclosure is not for everyone and that is also acceptable. Many AYAs report that social media can actually increase feelings of isolation and sadness when they see posts from healthy peers in their daily lives. Encouraging patients to register before engaging in any social media activity is key to ensuring it is the right source of support and connection for them. It might also be helpful for patients to set limits on their use of social media to ensure it is used appropriately and productively. If there are in-person or virtual AYA-specific groups or programs offered at their treatment center, it may be helpful to supplement both sources of support.

If an AYA patient you know needs support, please call CancerCare’s HOPE line to speak with an oncology social worker at (800) 813-4673. CancerCare offers free emotional support services, limited financial assistance, case management, educational programs and workshops for those affected by cancer, but especially for AYA patients.

References

Atkinson T, Avutu V, Barnett M, Glade Bender J, Lynch K, Tap W, Vera J. Psychosocial needs and care preferences in adolescents and young adults with cancer (15-39 years): a qualitative study . Cancer. 2022; 14(3):710. https://doi.org/10.3390/cancers14030710

Barton K, Frazier J, Rosenberg A, Steineck A, Walsh C. In search of virtual support: social media in the advanced cancer experience of adolescents and young adults. Pain and Symptom Management Diary. 2021; 61(3):691-692.https://doi.org/10.1016/j.jpainsymman.2021.01.102