Voices: Powerful advocate for breast cancer survivors dies

Jody Schoger understood what it meant to be isolated.

Schoger once described how she “curled up like a turtle” in her hospital bed while fighting the life-threatening infection that followed surgery for breast cancer in 1998. The infection developed after Schoger endured chemotherapy and four operations, including one to remove damaged tissue that left her wound “open to the bone.”

“I remember never even opening the blinds, just hibernating," Schoger told me. “I even started sleeping with the blankets pulled over my head. I was at the edge of the world.”

Schoger never wanted anyone else to feel that alone.

She spent the last years of her life working to bring people affected by breast cancer together, connecting them to information and each other.

Through her blog and a breast cancer support group that she co-founded on Twitter, Schoger became a teacher, a guide and a fearless friend to countless men and women, most of whom she never met in person.

The Twitter group called #BCSM, or Breast Cancer Social Media, has grown into a global community. Its hash tag has been used by more than 38,000 people.

Breast cancer survivor group is a social movement

Today, that community is in mourning. Schoger died Wednesday at age 61 from breast cancer, which returned 15 years after she was first diagnosed.

I’m in mourning, too, because Schoger had become my friend.

We met online in 2009, when we both joined Twitter. I reached out to her while researching stories on breast cancer, not once but many times over the years.

I stopped quoting Schoger after her breast cancer returned. Not because she was too sick but because I realized  I was no longer able to be objective about her as a journalist. I had begun praying for her.

Schoger, who has been an angel to so many strangers, no longer needs my prayers.

But the world needs more people like her.

Schoger was an antidote to so much of what is wrong with the world — the hatred, the intolerance, the selfishness, the ignorance.

Over five years, Schoger and her collaborators organized 229 Twitter chats, recruiting some of the top names in medicine to answer participants’ questions. Schoger knew that 60% of women with breast cancer never attend a support group. She guessed that many might be willing to follow a Twitter chat, even if they were too shy to speak up.

Women who joined these chats were hungry for information, sending an average of 700 Tweets during the hour-long conversations, according to an abstract that Schoger and her collaborators presented at a  medical conference in 2014. Twitter users have typed more than 416,000 tweets with the #BCSM hashtag, according to Symplur, which tracks health care social media.

#BCSM is a rarity in the online world, both for its intelligence and its tone.

Its organizers insist that any information shared must be supported by medical evidence. People who try to use #BCSM as a forum for spreading pseudoscience — such as the notion that a particular herb has miraculous healing powers —  are quickly shot down.

#BCSM is also extraordinary because of the positive tone set by Schoger and her collaborators, breast cancer survivor Alicia Staley and breast surgeon Deanna Attai.

When Schoger and I first connected on Twitter, the medium still gleamed like a new toy. Schoger made the medium seem warm and welcoming.

As Twitter has surged in popularity, it’s increasingly become a place to bully people rather than build them up. That has made communities such as #BCSM even more important.

Beyond its weekly chat, #BCSM has become an around-the-clock source of support. Women in distress can tweet to the group at any hour of the day.

Breast cancer survivor Anne-Marie Ciccarella recalls turning to the group one night when her anxiety about an upcoming scan kept her awake. "I was all alone in the house. I grabbed a phone. I typed something like, 'I hate this, the sleepless nights,' " Ciccarella said. "Someone from halfway around the world who was awake sent back a tweet saying, 'You're not alone. We're here. Just know there's a whole community behind you.' "

That community will endure, because there are  so many women who have taken up Schoger's call to action.

Szabo covers medicine for USA TODAY.