#BCSM, Cancer Advocacy and Education in the Virtual World

The advent of Web 2.0 changed almost everything – yet absolutely nothing – about the cancer experience.

What hasn’t changed is the near universal shock, dismay and fear that most women experience when they first hear, “your tumor was malignant.” What hasn’t changed is the long journey through treatment, which can range from multiple surgeries to include chemotherapy, radiation and even years of hormone therapy. What hasn’t changed is the emotional and physical toll, the financial burden, the threat to mortality, the long-term side effects from aggressive treatment.

But what has changed, and changed for the better, is the ability of any woman with breast cancer to talk about her experience, obtain information or support 24 hours a day, seven days a week through the interactive nature of Web 2.0. Now real-time conversations about cancer, whether the participant is in Bangkok or Bangladesh, can take place for anyone with internet access and a bit of internet savvy.

#BCSM, or #breastcancer social media, is an online discussion about issues related to breast cancer treatment and survivorship that takes place every Monday night on Twitter, the popular social media networking site. With a Twitter account, and a bit of practice communicating in 140-character messages called tweets, anyone with an interest in breast cancer can enter a virtual conversation about cancer that demonstrates the power, strength and bonds that can form in a virtual communities.

Nothing has pleased me more than to watch #BCSM’s growth. One of my interests, as a survivor and advocate, has always been to use the power of social media to bear directly on the cancer experience. How can we help women make empowered, evidence-based treatment decisions? How can we help support them through treatment and beyond, especially during the critical period following the end of treatment? How can we leverage curated information, time and place to bring the right answer, to the right woman, at that right time? #BCSM attempts to meets all these objectives and more.

#BCSM began July 4, 2011 with this simple question: What brought all of you here tonight for #BCSM? What do you hope to learn, gain, or share?

Since then #BCSM has logged more than 600 hours of dedicated conversation about breast cancer research, treatment and survivorship. There is an almost 50/50 split in subject matter, with of the conversations evolving around the emotional experience of cancer (T1: @ccchronicles just said that cancer can be “frightening & raw.” How can we help ourselves & other survivors out of the isolation?) and the other half concerning practical issues in cancer and scientific advances.

Some of the factors that characterize #BCSM and the potential of social media in “peer-to-peer” health care are:

  • Participants. #BCSM is one of the few health care chats to have a steady and supportive base of physicians, including medical oncologists, radiologists and surgeons;
  • Evidence-based. The moderating team includes a board certified breast surgeon, and “recaps” of clinical conferences including ASCO, ASBrS (American Society of Breast Surgeons) and SABCS, the San Antonio Breast Cancer Symposium are becoming a regular feature;
  • Transparency. The moderators are volunteers. #BCSM is self-funded. Other breast cancer-related tweet chats, sponsored by Genentech and GEHealthcare, are largely promotional. The #BCSM culture discourages “blatant self promotion.”
  • Survivors. The blue ribbon goes to the survivors who participate. They are honest, supportive and caring, even when they disagree. They find the best in each other and celebrate that quality. They are the singular quality that makes #BCSM excellent.

We all know that there are many divisions within the breast cancer community but for one hour we insist, through our actions and example, that they be put aside.

Our shared bond is support through the cancer experience, and our learning evolves in a trusted environment where all are warmly welcomed. #BCSM shows us how we can be when we share a collective goal. Together, participants of #BCSM intend to redefine pink.

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#BCSM takes place every Monday night on Twitter beginning at 9 pm ET, 8 pm Central, and 6 pm Pacific. The easiest way to follow the conversation is to go to tweetchat.com, sign in with your twitter account, and enter the #bcsm hashtag in the upper right hand corner. Everyone participating in the chat (or sometimes inappropriately using the #BCSM hashtag) will immediately populate the screen. Moderators are Jody Schoger, Alicia Staley, and Deanna Attai, MD.

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Breast Cancer Consortium member Jody Schoger has more than 25 years of experience in public relations and communications in health care, science, education and the arts. Following her own diagnosis with a locally advanced breast cancer in l998, she has since devoted her energy to helping other survivors. She is the author of the “Anchored Activism” column in Oncology Times, the respected WomenWithCancer blog, and the creator of Breast Cancer Social Media (#BCSM), a popular tweetchat for breast cancer survivors. Her writing has been featured in Cure Magazine as well as Cure’s blog. She has served as a grant reviewer for the Lance Armstrong Foundation, is a member of the Breast Health Collaborative of Texas, the National Breast Cancer Coalition, and serves on the American Breast Surgeons Board of Advocates. She recently spoke on survivorship on a #Med2 panel at Standord and will do so again at Life Beyond Cancer Center’s survivorship retreat and the fifth annual Digital Pharma East conference in Philadelphia. A frequent guest on SIRIUS radio’s “Doctor Radio,” she also has been quoted several times in USA Today and other publications.

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