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New Report: The Online Experience of Sarcoma Patients and Supporters
Date:11/1/2013

ised by what she read as she analyzed responses: “I have been involved in Internet discussions about sarcomas for years. I’ve seen hundreds of people come online because of a new diagnosis, and most are terrified. With time, even just a few hours of interaction with other people online, they feel better. It’s as if they are starting to process something that they thought was impossible to understand and accept.”

Despite the positive tone in most survey answers, 3 out of 4 participants dealt with difficult emotions because of their online activities. Fear, anxiety and sadness are common reactions as people read scary statistics and come to care about others who later have setbacks and lose their lives. A liposarcoma survivor wrote, “If I was not able to connect with so many patients, I would be protected from knowing the reality of my mortality.”

About 2% of those surveyed reported that searching for sarcoma information online was a harmful experience for them. They wrote about finding inaccurate, unhelpful, outdated and frightening information. Ultimately, this group of survey participants did not find what they needed online and did not feel supported. The report recommends that doctors and nurses offer patients an opportunity to talk about any information they have found that has made an impact on them, whether positive or negative.

Sorens added, “There are definitely people who fall between the cracks of online support networks and don’t feel helped by what they find online. But typically, the longer a person is active within the online sarcoma community, the more assistance and support they receive. Even so, the longer a person stays involved, the more treatment successes and failures they witness. There is no way to benefit from the hope and support online without being touched by fear and grief, and our survey participants made that pretty clear. Still, online information and support help most people cope; and ultimately, we hope that s
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