Sharing cancer journey on social media can be tricky

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At a time when it seems like everyone has a phone in their hands, cancer patients face a tricky question:

how much should they share on social media?

When 35-year old Rebekah Howerton of Roswell was diagnosed in 2015, at 31 with early stage breast cancer, she was reluctant to post about her diagnosis.

"Initially, it's kind of this fear factor, of what will people think, I don't know what to say," Howerton says.

Howerton, a public relations executive, broke the news to her young son and immediate family.

But she didn't post anything on social media until after her surgery, when her doctors gave her the all-clear.

"I said, 'Hey this happened to me, it was very difficult, but I had the support of my family,'" Howerton remembers. "The end."

Yet, that wasn't the end. 

Seven months later, Howerton's cancer was back, in the same breast. 

Only now, it was spreading.

"So, that pushed me right over the line to stage 4," she says.  "It had spread to my pelvic bone, my lungs and my ribs."

That's when she took a break from social media.

"I still didn't know what to say," she says.  "Because you're still in shock of, hey, you've been told you're going to die."

Dr. Wendy Baer, a psychiatric oncologist at the Emory Winship Cancer Institute says many of the patients she counsels find support and encouragement online.

"For some folks, they really like to share their journey," Dr. Baer says.  "But, I do hear a lot of patients struggle with social media, because the feedback they get once they post something is not always helpful. Sometimes well-meaning people will say, 'Oh, this is what you should do, or this is the treatment you should get.'" Or, they may say, 'My uncle had that, and it is terrible!'"

When you share private health information on social media, Baer says, you can open yourself up to criticism or feedback that may not be helpful.

Other times, what you share can trigger no response.

"One of the hardest things I hear people talk about, as they go through their cancer experience, is the reaction of people they expected to care more, to support more, and to be available," Baer says. "And they're busy or they don't answer. Or they don't click a like button or a heart button on your post. You have to be ready for that emotional downside."

With time, Rebekah Howerton returned to social media, looking for support.

"(I wanted to) find other women who were going through the same thing, and to find some hope, find some good stories," she says.

So, she shared her diagnosis, and asked if there were others out there with metastatic breast cancer.

"I found a community of women who were, like, 'Hey, we're here, we're with you. We understand.  We're going through the same thing. How can we help you," she says.

Howerton was recently told she had "no evidence of disease," the Holy Grail for metastatic cancer patients.

But she knows that could change. 

She's now running a private Facebook group for women with advanced breast cancer, sharing the message she so badly needed to hear. 

"We're normal," Howerton says.  "We're here. We're moms. We're working. I don't look sick. I don't act sick. This is just part of my life."