There’s a lot of information online about fighting cancer, but it can be hard to say which info is credible. Sometimes, it’s outright conflicting: One day we hear our latte-a-day habit might kill us; the next a study says coffee is probably fine. There’s prevention research on things you might expect could reduce your risk for cancer — like exercise — but then also on things that make you go “huh?” like cheese. (For real — some studies show dairy kills cancer cells.) For women actively battling cancer, it can be hard to figure out what to trust among the info floating around the Internet. But, a study published in JAMA Oncology shows that sharing experiences with fellow patients on social media can help women diagnosed with breast cancer feel better about their treatment decision.
Researchers looked at how 2,460 newly diagnosed breast cancer patients used a wide variety of online communication tools and platforms — email, texting, social media and web forums — to discuss their diagnosis, treatment or care. The study found 41 percent of participants reported using some form of digital communication. If that sounds surprisingly low to you, a Twitter/Facebook/Instagram addict, it’s probably because the mean age of study participants was 61.9-years-old — not exactly the target social media demographic (unless we’re talking about liking photos of grandkids). Overall usage was definitely more common among younger women, and texting and emailing were the most common (35 percent), followed by 12 percent of women using social media sites and 12 percent using web-based support groups.
“Women reported separate reasons for using each of these modalities. Email and texting were primarily to let people know they had been diagnosed. They tended to use social media sites and web-based support groups to interact about treatment options and physician recommendations,” said lead study author Lauren P. Wallner, PhD, MPH. Use of digital tools also varied by race: 46 percent of white women and 43 percent of Asian women reported frequent digital communication about their disease, but only 35 percent of black women and 33 percent of Latinas said the same.
So why is this a big deal? “Our findings highlight an unmet need in patients for decisional support when they are going through breast cancer treatment,” says Wallner. And for many women, a tweetstorm or emoji-filled text was a way to let off steam, talk through negative fears and stress and just plain cope. They were also more likely to feel positive and confident about the decisions they made for their treatment.
But, that doesn’t mean the study authors are necessarily recommending cancer patients fully rely on social media when they’re making literal life-and-death healthcare decisions. We talked to Cindy Pearson, executive director of National Women’s Health Network, to get some tips on how to be safe and smart if you’re seeking treatment advice online.
TIPS FOR USING SOCIAL MEDIA FOR HEALTH SUPPORT AND TREATMENT INFO
1. Be certain of the source. “Seeking peer support helps women get to better outcomes, so this is all good from a women’s health advocate’s perspective,” says Pearson. “But women need to know whether the person who wrote the information has a financial stake in their decision about how to handle their healthcare,” she says. “Be a slightly skeptical reader, ask a couple questions about who sponsors the website, check if it’s a .com vs .org and look to see if there’s any credentialing agency listed at the bottom of the website.” Even when it’s supposed to be a forum for patients, you never know if advertisers might slip in — kind of like those people who get paid to post positive Amazon reviews. If there are any pharmaceutical advertisements displayed on the site, that’s a sure sign that info could be biased.
2. Do your own research. “Women have been helped tremendously by tips from each other on how to get help with cancer treatment, and stories of what it was like for them when they had to get chemo, or take hormone drugs or get a mastectomy is wonderful information to get from peers,” says Pearson. “But also spend a lot of time on websites that are pure medical information, like cancer.gov and other good, solid websites with the down and dirty medical information.”
3. Take your time. It can be so challenging to not act immediately when you’re faced with a terrifying health crisis like breast cancer, but Pearson stresses that women should take the time to make sure the decisions they’re making are right for them. You can certainly give yourself more than a few days — even a couple weeks. “Breast cancer patients will be living with the aftermath of the treatment decisions they make immediately after diagnosis for the rest of their lives,” says Pearson. “You’ve got time. Take the time, and make sure you’ve really explored all the options and thought about what [a particular course of treatment] will be like for you.”
Have you ever sought advice for a health issue online? Tweet to us @BritandCo!
(Photos via Getty)