Cancer Patients Research, Gather and Share Online
What would you do if your doctor said you have only six to nine months to live because you’ve developed mesothelioma, a rare cancer caused by exposure to asbestos?
Would you know what to ask? Would you know where to look for information? Would you even know what it is?
Rich DeLisle, 76, of Clermont, Florida, pondered those same questions in 2012 when doctors diagnosed him with pleural mesothelioma. Although he listened first to what his doctors told him about the disease, he later searched online to learn the details of what he was up against and share what he discovered with others facing the same illness.
A 2014 Pew Research Center study shows 72 percent of adults in the U.S. search online for information about specific diseases and treatments. Those diagnosed with chronic conditions, including cancer, diabetes and heart disease, are more likely than other Internet users to research the illness, read the experiences of others and share their own stories online.
“I can’t imagine getting a serious diagnosis, and not having the want or need to search online about it, and find everything you can about it to understand it more,” DeLisle said.
As websites with beneficial health information for cancer patients and their loved ones continue to flourish, online users should always verify that information is accurate.
Online Research Helps Patients Understand Their Diagnosis
After first talking with his doctor and mesothelioma specialists, DeLisle searched online about the causes, prognosis, treatment options, clinical trials and anything else he could find about his diagnosis.
He shared his findings with his family, and together made decisions on what would be the right course for him.
With help from specialists, his family and the Web, he opted for a less invasive, lung-saving pleurectomy/decortication, rather than an aggressive extrapleural pneumonectomy surgery that removes the lung.
He also decided that chemotherapy would be an absolute last option.
“Although I don’t see myself getting chemo in the future because it wrecks havoc on the body, I have done the research. I know my options and if it came to that, then I will be well-prepared,” DeLisle said
Sharing Personal Health-Related Information Online
The Pew study also found that one in four online users read or watched someone else’s experience about health or medical issues.
In a time when almost anything can become public information on the Web, from what you’re eating for lunch to what you’re wearing to the gym, how much sharing is too much?
A 2008 study published in the Journal of Communication shows that online users diagnosed with cancer who seek Internet-based interactive support, such as an online support group, and gather information from high-quality websites, have a higher quality of life, increased health care competence and better social support.
“Sharing your experiences online gives you an outlet to connect with someone about your feelings. It’s different when talking to people close to you because they might be afraid to hurt your feelings or say the wrong thing,” DeLisle said. “Talking with someone who more or less understands what you’re going through gives you a better perspective.”
Online health or medical communities offer patients, their loved ones and caregivers a way to interact with others dealing with similar circumstances. Some also turn to social media network, such as Facebook, to share their experiences.
This network of support is invaluable when you have a mesothelioma diagnosis, a rare cancer that garners little attention and less financial backing than lung, colon and breast cancers.
Be Mindful of What You Read
There are countless benefits of using online information in the wake of a medical diagnosis, but there are some things to keep in mind.
Today, almost anyone can build and launch a website, upload any type of content to it, and use it to sell you a product they promise will cure your condition. Because there is no regulation of information on the Web, it’s important to discern between good and bad content.
DeLisle checks the sources of anything he reads online to ensure the information is from a credible source. He learned that strategy when he returned to college just before his diagnosis.
“The college was very strict on the sources we used and I learned a lot then, which I apply in my searches online. If the sources are from doctors, scientists, official government sites or advocacy groups, I know it’s probably good information,” Rich said. “Everyone should be just as cautious.”
- Fox, S. (2014, January 15). The social life on health information. Retrieved from http://www.pewresearch.org/fact-tank/2014/01/15/the-social-life-of-health-information/
- Gustafson, D.H., Hawkins, R., McTavish, F., Pingree, S., Chih Chen, W., and Serlin, R.C. (2008). Internet-Based Interactive Support for Cancer Patients: Are Integrated Systems Better? The Journal of Communication, 58(2), 238257. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3144782/
- Solberg, L. (2008, April). The Benefits of Online Health Communities. Virtual Mentor, 16(4), 270-274. Retrieved from http://virtualmentor.ama-assn.org/2014/04/stas1-1404.html