Twitter, perhaps 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 seeds of a social
movement.
Yet a weekly Twitter chat on breast cancer, launched
just over 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 "are amazing. And they tell each other so,"
says co-founder and breast cancer survivor Jody Schoger, 58, of The
Woodlands, Texas. "They find the best in each other and celebrate that
quality."
Robert Miller, a medical oncologist at the Johns Hopkins
Kimmel Cancer Center In Baltimore, is a frequent guest expert on BCSM.
Miller 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."
Psychologist Ann Becker-Schutte, a frequent guest
expert on BCSM, says the support group take its positive tone from its
leaders.
Schoger and her fellow organizers -- who became friends
online months before ever meeting face to face -- each bring unique
talents, says Becker-Schutte, who specializes in helping people with
serious diseases.
Schoger is a writer with a background in public
relations. Co-founder Alicia Staley, 41, is a three-time cancer survivor
from Boston, as well as an information technology analyst and online
community manager.
The third member of the team, California breast
surgeon Deanna Attai, joined BCSM during its second chat and quickly
became a co-moderator.
A well of support
Each
moderator works hard to keep conversations on track and avoid the
pitfalls of traditional support groups, Becker-Schutte says. While other
support groups may allow people to vent their frustration, she says,
BCSM provides a way for people to transform those frustrations into
action.
In most support groups, "one or two patients sort of take over, and
it turns into a bitch session," Attai says. "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."
Schoger
says she's 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."
Staley says the group's success has
surprised her. There's no formal promotion. Instead, early participants
often stumbled across the chats after searching for keywords -- known on
Twitter as hashtags -- such as cancer.
"This is something incredible that has grown out of a hashtag," Staley says.
The
virtual community has spent more than 600 hours in conversation since
their first chat. Schoger alone devotes about 15 hours a week to BCSM,
and another 10 more to her blog,
Women With Cancer.
The key
to forming a close-knit community, Schoger says, is listening. She
notes that many organizations and companies use social media such as
Twitter as a one-way broadcasting system to put out a message of the
day. The most successful people in social media foster real
conversations, she says.
Becker-Schutte notes that the women's
fellowship doesn't end with their hour-long chats. BCSM leaders monitor
the group's ongoing conversations. "If someone is having a hard time, it
isn't long before someone responds." Becker-Schutte says.
Conversations
such as BCSM fill a huge void, Attai says. She began chatting with
breast cancer patients 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. "Two women shouldn't have to go online in the
middle of the night."
And although individual tweets are brief,
the group delves into deep subjects. BCSM has tackled issues such as
parenting and maintaining a career through breast cancer treatment;
emotions such as anger, anxiety about recurrence and survivor's guilt;
and post-treatment complications such as "chemo brain" and lymphedema,
which causes arm swelling.
Staley, who developed breast cancer
twice after receiving radiation for Hodgkin lymphoma, says many patients
feel alone. She divides her cancer experience into three phases:
diagnosis, treatment and "after."
"The diagnosis comes at you fast
and furious," says Staley, who blogs at awesomecancersurvivor.com. "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. Hundreds of cancer
survivors across the USA now blog about their experiences.
Online
communities can be especially powerful for those with rare diseases, who
often may not be able to find other people with their condition in
their communities, says Terry Lynn Arnold, of Friendswood, Texas.
Arnold,
who has a rare type of breast cancer called inflammatory breast cancer,
says she has formed close bonds on Facebook with women she would likely
never have met in person.
Doing their homework
BCSM stands out from most other support groups, however, 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. The group regularly dissects the latest
research and routinely recruits experts. Some of the more science-heavy
topics have included clinical trials, hereditary breast cancers and how
to avoid "voodoo medicine."
In addition to Miller and
Becker-Schutte, guest experts have included Matthew Katz, director of
radiation oncology at Lowell General Hospital in Massachusetts; Julie
Gralow, director of breast medical oncology at the Seattle Cancer Care
Alliance; and St. Louis breast surgeon Diane Radford.
Although the
group has plenty of compassion for people with cancer, members have
little patience for hecklers, self-promoters or spammers, Staley says.
"There
are plenty of angry communities on Twitter, but we're not one of them,"
Attai says. "If someone wants to pick a fight, they will quickly learn
that's not what we are about. 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."
Connecting across platforms
Attai
and other doctors say the chats have given them a better sense of what
patients are going through, and "how much my patients were holding back
from me."
And while the community may be virtual, the emotions
expressed are palpable, especially when participants are in crisis, or
grieving the loss of a loved one, Schoger says.
Last February,
BCSM lost two of its members in one day. Organizers scrapped their
planned chat and devoted the entire hour to remembering the two women.
"We had what can only be called a virtual wake," Schoger says.
And
while BCSM isn't political, the community has developed a strong voice
on key issues in breast cancer. The group regularly criticizes
"pinkwashing," or the commercialization of breast cancer, which is
invoked throughout October to sell products. Breast cancer bloggers are
taking up the issue, as well, so much that "pink-ribbon fatigue" is
becoming a common phrase.
Members of BCSM are also "fearless
friends" to women with metastatic disease, which has spread to other
organs and is incurable. Such women often feel unwelcome and abandoned
by other breast cancer groups, Attai says.
"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."
Partly due to efforts like BCSM's, women with
metastatic disease say their concerns are far more visible this year
than just a year ago.
Lessons spread
BCSM's founders
say they would love to help other patients start or expand similar
communities. Patients with very aggressive kinds of cancer, such as
ovarian or brain tumors, often aren't healthy enough to form the sorts
of advocacy groups that exist in breast cancer, Staley says. Often,
these patients go immediately into aggressive treatments, which can make
it difficult for them to organize support groups.
There are more
than 2 million breast cancer survivors alive today, however, and many of
them are relatively young and tech-savvy, she says.
Creating more
communities like BCSM, however, would require finding moderators who
are equally compassionate, dedicated and informed, Becker-Schutte says.
"They're pretty amazing," Becker-Schutte says. "They are doing for the
community what they wish had been available for them in their initial
diagnosis and treatment."
