Diagnosed with cancer in their 20s and 30s, these women turned to TikTok: 'It makes you feel less alone'

“Hi. My name is Jenna Lyons. I am a 36-year-old mom of three boys — 11, 9 and 5 — and I have Stage IV metastatic breast cancer. What you might need to know about that is, as of now, metastatic breast cancer is terminal, or incurable. I don’t really have a time frame of life expectancy.” This is how Jenna Lyons introduced herself in her first TikTok video, two years ago.

Lyons never expected her post — which has since been viewed more than a million times — to go viral. At the time, her goal was to leave behind a video diary for her sons so that they would have a way to remember her. Today, Lyons has more than 125,000 followers and posts frequently about her treatment journey and life as a mom living with cancer. “My kids still really like the videos, and they will still be there for them, but it’s turned into more of an awareness account, and [it’s] therapeutic for me and cathartic in a lot of ways,” she tells Yahoo Life.

Lyons’s account is part of what's known as #CancerTok, a growing resource for the increasing number of young people being diagnosed with cancer. She credits her account’s popularity with her commitment to authenticity. Lyons despises toxic positivity and wants her account to be a place where people see the good stuff (the days she has energy and can be active with her boys, or feels hopeful that she can manage the disease in order to live longer) as well as the bad (feeling unwell, experiencing medical setbacks, fears that time is running out). Lyons also shares her family’s financial struggles and shows how her husband and mom function as her caretakers.

“I’m not just a cancer patient making videos [of myself] being hooked up to medication,” Lyons says. “This could be any of us at any point. [I show] how [cancer] affects your life, but also [how] life keeps going.”

Advocacy is also an important part of Lyons’s posts, and she believes this is one of the benefits of #CancerTok. “I think that TikTok helps people have the confidence to come forward and advocate,” she says. Educating people and encouraging women to ask for tests and question doctors’ opinions gives Lyons’s own diagnosis meaning, and she’s had many women reach out to tell her that her videos are why they stopped putting off their mammogram.

Like Lyons, Natasha Allen never planned to go viral or have more than 146,000 followers on TikTok. In 2020, when she was 23 and first diagnosed with synovial sarcoma, a rare soft tissue cancer, it was the height of the COVID pandemic. She’d been on TikTok for a few months, but she was more of a watcher than a poster. That changed when she was staying in the hospital to receive chemotherapy. Allen was lonely and bored and started making videos to entertain herself.

TikTok quickly became a source of community. “When I started with TikTok, I felt like I was the only one, and being able to post and see comments of people saying ‘I went through this, too’ and ‘This happened to me,’ it makes you feel less alone,” Allen tells Yahoo Life.

She now uses her platform to help educate others. “I like spreading awareness because, one, not everyone knows about the intricacies of cancer because you only see the romanticized version on TV and in movies, and, also, my cancer is rare, so I wanted to raise awareness for sarcomas because it does affect young people the most,” Allen adds.

Allen also hopes the videos she posts help people understand what it’s like to be in your 20s and battling a disease that you never expected to have at all, especially so young. Zoe Plastiras, a 24-year-old in the United Kingdom with non-Hodgkin’s lymphoma, feels similarly. Plastiras, who was 32 weeks pregnant when doctors found a tumor in her chest, was already active on TikTok before her diagnosis. Her first post about having cancer received more than 40,000 views and a flood of comments.

“A lot of my cancer-related videos go viral, and it always opens [me up] to more help from people going through the same thing,” Plastiras tells Yahoo Life via email. Over the last year, she’s filmed her chemotherapy, radiotherapy and blood transfusions and discussed her evolving treatment plan. Her videos also demystify what it’s like to live with cancer and be a mom to a toddler, which is why she uses the hashtag #MumsWithCancer when she posts. “I like to use that hashtag, so people can find me that may be looking for someone like me,” she shares.

What experts say

Sean Young, the executive director of UCLA’s Center for Digital Behavior and a professor in the UC Irvine departments of Emergency Medicine and Informatics, believes the way social media can create a supportive community for people in the way #CancerTok has done is incredibly beneficial. It's also one of the positive aspects of social media that is often overshadowed by the negatives, such as the impact on young people’s mental health. “Whether it’s #CancerTok or any other online community for cancer, and this goes for other conditions, people feel much better knowing that they aren’t going through something alone,” Young tells Yahoo Life. “So being able to see posts and hear information from others who are experiencing the difficult times that they are experiencing can make people feel comforted by not being as lonely.”

However, Young cautions, people need to be aware that #CancerTok is unmoderated, which means, like everything else online, it comes with the risk of receiving misinformation or being bullied or targeted. Lyons believes the homeopathic remedies people advocate, for example, can be dangerous, so she ignores them. Allen has experienced negative comments and unsolicited, medically inaccurate advice. But it doesn’t deter either from using the platform.

Laura Chambers, a gynecologic oncologist and assistant professor of obstetrics and gynecology at the Ohio State University College of Medicine, was inspired to research TikTok videos about gynecologic cancers to better understand the quality of information her patients receive when turning to social media to fill health information gaps. She also wanted to know how the way that people talk about their cancer on social media reveals what they value and what they experience when going through treatment.

While her study found that at least 73% of information being shared through TikTok was either inaccurate or of poor educational quality, she believes that #CancerTok is incredibly beneficial for patients, especially young ones. “I think having an online support community and a place where you can see what others are going through and interface with their experiences is incredibly valuable,” Chambers tells Yahoo Life. However, she encourages patients to take the information they find with a grain of salt. “It’s really important for patients to know there are things that may not be correct, and in those situations, it’s really important to discuss those questions and concerns with your health care team.”

Despite the potential for misinformation, Chambers still believes in social media’s potential benefits. For example, she has a young patient who was asking her about cold capping to reduce hair loss during chemo. There isn’t a lot of great information out there about it, so she referred her patient to social media to learn more about people’s experiences while using it. (Lyons is one of those people. She has a video that explains the technology and how it has allowed her to keep her hair).

“The problem I have right now is [we] don’t have a lot of great medically vetted resources to give patients,” Chambers says. While she can refer people to patient advocacy groups, her dream is to one day be able to give patients a list of high-quality content creators that she can trust because they have been vetted in some way, and she believes it’s important for health care providers to become involved in that process.

Young feels similarly. “My hope for the future of … #CancerTok or other technologies like it is of not only providing a supportive community but building in some structure so that the community is supportive, reduces misinformation and can help improve [or] change people’s health behaviors,” he says.

In the meantime, the TikTokers who spoke to Yahoo Life say they're grateful for the role #CancerTok has played in their lives since their diagnoses. Says Plastiras: “I love the remission comments the most, because it gives me hope. I don’t know what people with cancer did without social media all those years ago.”