My Fantastic “Twitter” #BCSM (Breast Cancer Social Media) Community

Members of #BCSM Community after lunch from left to right starting from the top: Carmen, Liza, Lori, Dr. Attai, Me

For those of you that don’t use Twitter the # is a hashtag to refer to a group. The #BCSM (Breast Cancer Social Media) Community meets every Monday night at 9PM Est or 6PM PST to discuss different topics about breast cancer. I was always afraid of social media, but knowing that I am starting my non-profit organization called Advocates 4 Breast Cancer, I realized that I needed to get involved with social media. When I went to Washington DC for the National Breast Cancer Coalition Advocacy Meetings and Lobby Day in May of this year, I met other bloggers and took a class explaining how to use social media. The Twitter thing had me very confused but thanks to Lori who sat next to me and who blogs at “regrounding of chemo, cancer and red, red wine,” I signed up for Twitter and she told me about the #BCSM community,  It took me some time to realize they had these meetings on Monday nights and I am so grateful to Lori for telling me about them. She also invited me to meet some of the group and I met one of the moderators Dr. Attai as well as Carmen and Liza for lunch in LA a few months ago. To the right is the picture of us after our lunch meeting in LA.

We had a wonderful write-up in USA Today. It is so good that I am going to print it here. There is also a video that is worth watching included in the story. I am so proud to be part of this group.

To read and see the video of the full story click here: VIDEO & STORY

 

This is the final installment in USA TODAY‘s four-week series on breast cancer. The series looks at screening, treatment and support via social media.

7:40AM EDT October 23. 2012 – 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.

MORE: Health and wellness coverage

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.”

Coming up on Twitter

Join the discussion about breast cancer screenings #abcDrBchat at 1 p.m. Oct. 30.

Breast Cancer Social Media (#BCSM) Community on Twitter

I am very happy to be a part of the Breast Cancer Social Media (#BCSM) Community that meets every Monday night at 9pm EST or 6pm PST. For those of you not on Twitter the # sign is a hashtag that one uses when on twitter to have the group going to the same place to discuss issues in the community. Last night we met and spoke about the topic of MBC (Metastatic Breast Cancer) and had Lori who blogs at Regrounding, speak to the group about her experience with MBC.

During our previous discussions we have been talking about #redefinethepink and came up with a great expression called “Pink Responsively”. We went on to say that we also need to get recurrence and MBC out of the closet. It is so important that there not be a separation of both the breast cancer community and the MBC community. Lori explained how different it is for those in the MBC community because usually when one is first diagnosed with breast cancer they have a chance thinking they have been cured but once you are Stage IV you have a chronic condition that will over time after different chemo regimens take one’s life. As I have mentioned according to Metavovor 30% of all breast cancer patients will go on to have MBC and eventually die from the disease, yet when one is early stage and does surgery, and/or chemo and/or radiation there is a chance they will not have MBC. So as you go through treatment you have a sense of security thinking you have NOD (no evidence of disease) and hope that’s the end of it.

There is a lot more to this but I am so excited that we were written up in an article that I wanted to share it with all of you before I go to my follow up meeting with my oncologist today. Here’s the article about a group that I am very proud to be a part of.

Different corners of the world, all united through the Internet

Breast Cancer Social Media: http://www.bcsmcommunity.orgPosted: Tuesday, October 16, 2012 12:00 am | Updated: 11:19 pm, Mon Oct 15, 2012.

By Kelcie Pegher Times Staff Writer | 0 comments

Dr. Deanna Attai, Jody Schoger and Alicia Staley live on different corners of the United States, but all share one common goal — bringing breast cancer fighters, survivors and advocates for a cure together through social media.

The three co-moderate a weekly chat on the microblogging social networking site Twitter, called #bcsm. The hashtag is used to curate all other tweets about a similar subject. In the case of #bcsm, it curates tweets about Breast Cancer Social Media.

Online cancer support groups have been popping up for years, but in the last year, vocal cancer survivors have harnessed the support into networks. Twitter chats range from those who love yoga or are passionate about computer coding, to support groups of those who have cancer.

Mailet Lopez, the founder of I Had Cancer, a social media website for all types of cancer, began the site in August of last year because of the isolation she felt when she had breast cancer. Lopez said she became the go-to person when a friend, or family member had a question about cancer, and would help give support in her spare time to answer questions a doctor just couldn’t.

Instead of turning to Twitter or Facebook, Lopez, who lives in New York, was encouraged to write a blog.

The blog turned into a website, and was launched as a social media tool to ask questions about different types of cancer and find others in the area. The site has more than 7,000 users, including a few in the Carroll County area.

“People don’t realize that they’re so alone in this process and speaking to someone else makes such a difference, just knowing someone who has your cancer who has been [through] it. It really provides that kind of support and positive outlook that some of us really need,” Lopez said.

Lopez said the site has a visual map a person can organize by cancer or location to find others with similar experiences. When partnering with Squeaky Wheel Media for the site, they used elements from social networking sites they liked in order to make the user experience fluid. Users can give as much or as little information as they’d like, Lopez said.

Online support groups like I Had Cancer can help people at all hours of the night or allow someone to remain anonymous, Lopez said.

Following a recurrence of breast cancer in 2008, Staley found herself turning to Twitter in the hospital in the middle of the night to talk.

“For me it was an enormous, very authentic, engaging support system,” Staley, from Boston, said.

Staley, 41, joined Twitter reluctantly after being prodded into it by friends. One of the first things she did was type “Cancer survivors” into the search bar, and was amazed to see how many people proudly stated they were a cancer survivor in their 160 character biographies at the top of the page.

Staley developed Hodgkin’s Disease during her sophomore year of college in the early 1990s. In 2004, she was diagnosed with breast cancer, due to the radiation and chemotherapy she received for Hodgkin’s, she said. In 2007, she was diagnosed again and underwent a double mastectomy.

What marked Staley’s college experience was feeling isolated. In 2008, that feeling changed.

“Within two weeks [of joining Twitter] I found other young adult women Hodgkin’s survivors that had gone on and developed breast cancer. And it felt like, ‘Wow I finally found other people like me,’” Staley said.

#BCSM

After spending a few years on Twitter, Staley found herself crossing paths with Schoger, based in the Woodlands in Texas, during a health-care chat the two participated in. The two were always passionate about patient issues during the health care social media chat, and exchanged information to try to start a chat for patients and advocates.

On July 4, 2011, the pair got the chat off the ground with about 60 active people chatting for the hour-long session. The chats begin with people introducing themselves, and then the moderator asking a question with the label “Q1,” for the first question, all the while keeping the hashtag in the tweet.

Staley said there are now a minimum of 175 active participants in the weekly chat which tweets on Monday nights at 9. Across the country in Los Angeles, Attai, a breast cancer surgeon, began following the group to help patients around the country, she said. She began in the second week and asked to become a co-moderator in the weekly chat.

“There’s a lot of ways patients in general are getting their information. As physicians we have to accept it and kind of embrace it. I just see it as really an extension of what I do in the office,” Attai said.

This year, Staley, Schoger and Attai had the opportunity to sit down, have a cup of coffee, and finally be in the same place at the same time. Staley said meeting the two women was like meeting long-lost sisters.

“It’s a virtual support group. [Attai] and [Schoger] are incredible women. They’re wonderful role models for me in terms of what they do for advocacy and assistance,” Staley said.

October has been a busy month for Staley and others in the breast cancer social media group, Attai said. Because the #bcsm community has grown so quickly over the last year, the three developed a website to continue the work and advocacy they do.

Monday’s talk was about metastatic breast cancer. The previous week’s was about Breast Cancer Awareness Month, and whether it’s still relevant.

“This is a pretty sophisticated audience,” Attai said. “It’s kind of a step above your average layperson audience.”

In conversations about the pink ribbon, members in the chat thought critically about what the pink ribbon is and what it has become.

“It has taken awareness out of the closet and chipped away at the stigma. As a result, more women have sought help,” wrote the user with the Twitter handle @ABHuret.

A user with the Twitter handle @chemofogbrain replied the awareness ship sailed in the Western world, and now they need to work on where the money goes.

In talking with @chemofogbrain, Attai said she feels awareness is still needed, because some patients she sees in Los Angeles have advanced breast cancer.

Keeping a group of passionate people connected on one subject and respectful of others can be challenging, but the three women are up to the challenge.

“It’s an incredible group of women there are people that are advocates, there are people that are educators. We just had one of our first male breast cancer supporters this week,” Attai said.

Staley said the website will be an extension of the chat, and is expected to launch today.

Reach staff writer Kelcie Pegher at 410-857-7890 or kelcie.pegher@carrollcountytimes.com.

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