#BCSM - Breast Cancer Social Media Support

by Elissa Malcohn

Community Resource: Breast Cancer Social Media (#BCSM)

Breast Cancer Social Media (#BCSM) is but one example of how Twitter is much, much more than tweets about celebrity gossip or what someone had for dinner. This very active community includes patients, doctors and other health care providers, researchers, caregivers, advocates, and other supporters. I found #BCSM two months after my diagnosis and participated in my first chat four days after my first chemo infusion. 

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A Dream Team of Cancer Advocates

The topic that evening was the American Society of Breast Surgeons, an organization that would later be led by Dr. Deanna Attai (@DrAttai), one of #BCSM's co-moderators. Dr. Attai had joined #BCSM shortly after its first chat on July 4, 2011. That initial chat was moderated by Alicia Staley (@stales), a three-time cancer survivor; and Jody Schoger, who died from metastatic breast cancer in May 2016. I feel privileged to have known Jody, for far too brief a time, via these chats.

In her tribute to Jody, Alicia wrote, "Our backgrounds were so very different, but we were always drawn to advocacy. I’m an engineer through and through, Jody had the writing chops, public relations, and marketing background, and Deanna, the surgeon, provides the medical oversight, infrastructure, and community support. It's a dream team of cancer advocates."

Dream team is right. On Mondays at 9 p.m. Eastern, 6 p.m. Pacific, we gather on Twitter for at least an hour. We open with introductions, hellos, and catching up, and we close with virtual hugs and cookies. Most times we chat about a specific topic -- survivorship, genetic testing, caregiving, chemo, radiation, palliative care, clinical trials, scanxiety, metastatic breast cancer, nutrition, survivor's guilt, reconstruction and going flat, and more. (A chat on patient advocacy gave me resources that in turn helped a good friend of mine last year.) Or we get updates on conferences like the Miami Breast Cancer Conference, the San Antonio Breast Cancer Symposium, and meetings of the American Society of Clinical Oncology and American Society of Breast Surgeons. Those conferences are also live-tweeted, often with photographs of slides and poster sessions. Occasionally we have an unstructured "open mic" chat, where we can talk about anything and everything.


#BCSM's overarching goal is "providing evidence-based education and support for anyone affected by breast cancer." Participants in our "Ask the Docs!" chat last year included six breast surgeons (including one from Venezuela), two medical oncologists (including one from the UK), a radiation oncologist, a plastic surgeon, and at least two cancer researchers. Most of them are chat regulars.

Our first chat of 2017 (topic: building a more collaborative community) had 48 participants and collectively we generated 407 tweets. Each Monday night the hour seems to fly by. Some of our newcomers are also newcomers to Twitter, so we also provide tech support where needed. The #BCSM website has a helpful guide at http://bcsm.org/bcsm-tweetchat/.

Collaborations With Other Advocate Groups

Some of our chats are cross-cancer collaborations. We've held joint conversations with Lung Cancer Social Media (#LCSM), Brain Tumor Social Media (#BTSM), and others. Our chats are open to all, and we, in turn participate in various community discussions, like those at Healthcare Leadership (#HCLDR) and #Hcchat, an official chat of the Cancer Moonshot initiative.

Cancer Moonshot

Participation goes well beyond the chats because #BCSM runs 24/7. Links to articles about the latest research are posted, along with links to entries in cancer blogs. As I write this, I am preparing for my quarterly checkup with my oncologist. The questions I'll be asking him include two that are based on studies (presented at the San Antonio Breast Cancer Symposium in December) that I learned about through #BCSM.

Camaraderie is central to the community. If someone posts about having scanxiety, we see it on the feed and offer comfort. We grieve losses and celebrate cancerversaries and good reports together. We provide input if someone asks about how to handle side effects. We have our version of a "bat signal" -- a way to contact the community, including doctors if someone needs urgent support. In addition to Twitter, #BCSM offers a resource-rich website at http://bcsm.org. Our transcripts can be found at http://www.symplur.com/healthcare-hashtags/bcsm/.

#BCSM is my go-to online cancer support place in addition to WhatNext. I received a warm welcome when I tweeted as a newbie back in May 2014. Ever since then, the #BCSM feed has been a top information source for me and the chats have been a highlight of my Monday nights.

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"Ejourneys" is a long time WhatNexter providing support, answers, motivation and inspiration to other WhatNexters on the site. She is a perfect example of why WhatNext was formed, for one person who has been through the traumatic experience of a cancer diagnosis, treatments, all the side effects that come with them, and moving into survivorship, to share those experiences with others. 

You can view her profile page at WhatNext HERE and follow her on Twitter HERE

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