October 23, 2012
(USA TODAY) -- Twitter, best known lately as a source of Big Bird jokes, might not seem like the first place to look for a breast cancer support group, a boot camp in medical research or the beginnings of a new social movement.
Yet a weekly Twitter chat on breast cancer, launched just over a year ago, has blossomed into all those things and more, participants say.
The online chat, known as BCSM -- or breast cancer social media -- has a growing following of men and women looking to share war stories, empower patients and change the national conversation on breast cancer.
Folks who join the chats "find the best in each other and celebrate that quality," says co-founder and breast cancer survivor Jody Schoger, 58, of The Woodlands, Texas.
Robert Miller, a medical oncologist at the Johns Hopkins Kimmel Cancer Center in Baltimore, says he understands how those unfamiliar with Twitter might be "skeptical that exchanging 140-character messages with a group of strangers for an hour every Monday night would be an effective tool. But it really is."
Setting the tone
Psychologist Ann Becker-Schutte, a frequent guest expert on BCSM, says the support group takes its positive tone from its three leaders, who became friends online months before ever meeting face-to-face.
In most support groups, "one or two patients sort of take over, and it turns into a bitch session," says co-moderator Deanna Attai, a breast surgeon in California. "That's not what you see with #BCSM. We have a common goal -- that's to educate, empower and support, and all that participate seem to embrace that."
Alicia Staley, co-moderator and a three-time cancer survivor, says the group's success has surprised her. There's no formal promotion. Instead, early participants often stumbled across the chats after searching for key words -- known on Twitter as hashtags -- such as cancer. "This is something incredible that has grown out of a hashtag," Staley says.
Attai first connected with breast cancer patients on Twitter after noticing a 1 a.m. conversation between two women about Paget's disease of the breast, a rare form of cancer that Attai has treated. "Patients just aren't getting the information they need," Attai says.
And while individual tweets are brief, the group delves into deep subjects. BCSM has tackled issues such as maintaining a career through breast cancer treatment; emotions such as anger and anxiety about recurrence; and post-treatment complications such as "chemo brain" and lymphedema, which causes arm swelling.
"The diagnosis comes at you fast and furious," Staley says. "You make your decision for treatment. You get to the end of the treatment plan, and you get a pat on the back and off you go into the world. I've been through this three times, and the 'after' part is the hardest. You are pushed back into the real world, and you have to redevelop your framework for connecting. That's what this community has done, to prop me up post-treatment, to get me back into the real world."
The Internet is teeming with online support groups, of course, including dozens just for breast cancer, Schoger says.
BCSM stands out from most support groups because of its rigorous focus on medical evidence, Attai says. Given that myths and misinformation can spread like wildfire online, Attai says, it's crucial for BCSM to provide accurate information that's supported by strong science.
"If someone wants to come and promote broccoli extract (as a cure for cancer), we will call them out on that, and they will go elsewhere," Attai says.
And though the community may be virtual, the emotions expressed are palpable. When BCSM lost two of its members in one day, the chat became "a virtual wake," Schoger says.
And BCSM isn't political, but the community has developed a strong voice on key issues in breast cancer, from "pinkwashing," or the commercialization of breast cancer, to the need to better support women with metastatic disease.
"It seems like the community as a whole have turned their backs on men and women with metastatic breast cancer," Attai says. "If you don't fit into this narrow window with pink, 'happy' cancer, then the community has no place for you."
Schoger says she has been pleased to see how BCSM helps women -- and the occasional man -- think through complex issues and become leaders.
"So many of these women are writing stronger blog pieces and are taking up the mantle in different breast cancer organizations," Schoger says. "I just love watching it."
Copyright 2012 USA TODAY, a division of Gannett Co. Inc.