Cancer Previvors and Social Media

A few years ago, researchers from the University of Sheffield contacted me for their study on hereditary cancer syndromes and social media use. I participated in their interview and later joined their workshop.

The Previvorship in the Platform Society project recently published its final report after three years of work. The research team analyzed over 80,000 social media posts, interviewed 60 hereditary cancer content creators and spoke with 21 people who chose not to share. As we participated alongside researchers, advocates and other previvors, our conversations highlighted what makes online community experiences feel positive or negative.

Before the report, I want to show how this research connects to real life. The findings matter not just to those involved but also to wider communities beyond academic circles.

Social media platforms create different experiences. What you see varies a lot. Instagram often shows pink ribbons, survivorship quotes and photos of people who look healed. On TikTok, you might find videos of people sharing their journeys before chemotherapy or women showing their flat chests. Twitter/X is mostly filled with conversations between scientists and clinicians, often using language that most patients do not understand.

These differences are more than just changes in tone. They reflect completely different realities. For example, a 22-year-old just diagnosed with the Lynch gene who turns to TikTok will probably have a very different first experience than her mother, who looks for information in a Facebook group. A man with Lynch syndrome might have trouble finding stories he relates to. When the content people find does not match what they need, it can shape how they see their risks, choices and future. This is a big problem.

The individuals shown in social media feeds do not reflect the full diversity of the community. The research provides data for a long-recognized problem: The most widely shared images of hereditary cancer mostly show White women whose bodies align with a narrow, conventional idea of survivorship —appearing healthy, reconstructed and normative.

Usually, there is little representation for flat closures, stomas, men, people of color and LGBTQ+ community members. These gaps are strongly felt. When people cannot find faces or stories like theirs, it can have a big impact on those looking for relatable experiences for themselves or loved ones. The report said transgender and non-binary people often feel isolated, since their experiences are rarely shown in hereditary cancer content. For those already dealing with a tough diagnosis, not finding shared stories can make loneliness worse.

When stories from underrepresented groups do get noticed, such as someone sharing a photo of a colostomy bag or flat closure, the reaction is often negative. For every person who bravely shares, many more look for similar stories and cannot find them, so they stay silent. This lack of representation sends a message, whether intended or not. Addressing this requires ongoing effort, as the report encourages us to continue improving representation.

Besides representation, the report discusses another big challenge: the emotional and hidden burden of sharing online. For many of us, telling our stories online becomes a second job, and not a glamorous one. You are writing, filming, editing and replying to messages from strangers who just got their results and are scared and alone at midnight. You do all this while recovering from a colonoscopy, still sore from surgery, or juggling your kids and your real job. It all happens at once, all the time, with no pay and no guide.

Some people posted photos of their surgical recovery, only to have them flagged as inappropriate. Sometimes accounts vanished without warning. Content that takes hours to make often reaches very few people due to unclear algorithms.

This kind of exhaustion, showing courage and then getting punished by the platform, is hard to explain to anyone who has not gone through it. People who have shared about hereditary cancer online probably know this feeling. Getting mocked or receiving negative feedback can make you wonder if staying silent would be easier. Many people share this experience.

But the community is real, and it has made a difference. For example, one workshop participant shared that seeing a surgeon's post-reconstruction photo on Twitter years ago gave her the courage to have a preventative double mastectomy. She said that one post might have saved her life. With this in mind, it is important to ask, “Is this post going to be helpful or hurtful?”

The interviews put words to something I have always known. There is a particular kind of relief that comes from saying out loud, "This is horrible, and this is unfair," and having someone who actually gets it say, "Yes, I know." Not out of politeness, but because of shared, lived experience.

Closed Facebook groups, comment sections and DMs at odd hours have been lifelines for many of us during our hereditary cancer syndrome journey. In fact, friendships often began with a shared diagnosis and became something real. For many, especially in those first months after learning their mutation status, that connection was not just helpful — it was what got them through emotionally challenging times.

Sadly, fear spreads faster than facts on social media, so our community must be the remedy. Algorithms often prefer drama over truth. Honest voices are needed to clear up confusion, prevent care delays and help people find reliable information.

Being honest and accurate on social media matters, even when it is tough and the algorithm works against you. The report does not just point out problems, but it also suggests practical actions for platforms, healthcare professionals and content creators to support and strengthen our communities.

This research is a reminder: our stories matter, and our voices bring hope and connection to those searching for support. Moving forward, it’s crucial for all of us to keep working together, be mindful of the content we create, and build a space where everyone feels seen and heard.

Georgia Hurst is a patient advocate living with Lynch syndrome and a participant and workshop contributor in the Previvorship in the Platform Society project.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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