A breast cancer support network on Twitter: #BCSM

#BCSM's Jody Schoger (L) and Alicia Staley (R) tweet and blog in Dr. Deanna Attai's Burbank, CA office. Photo: Robert Hanashiro, USA TODAY.

I'm very happy to see the wonderful #BCSM Twitter community receive some well-deserved attention in the form of a USA Today article this week. Through this group, which holds a weekly chat session on Monday evenings, I met some amazing women with breast cancer. I also met medical professionals who expanded my knowledge of the disease—and, how to survive the hell that is treatment. BCSM stands for "breast cancer social media," but people with other forms of cancer have used it as a model for conducting weekly chats and maintaining a kind of "bat-signal" for people with a given form of the disease. BTSM, for people with brain tumors, comes to mind. With each of these communities, you just include the hashtag in a tweet, and your cancer compatriots reply. It's hard to wrap your head around how vital this is unless you actually have cancer, but I see people using that hashtag all the time when they're in crisis, to receive a kind of comfort from the isolation that bad cancer-news brings. For instance, learning in a routine oncology checkup that their cancer has returned, and is now an incurable stage IV.

Snip from Liz Szabo's USA Today profile:

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."

Read the whole article.

I never went to an in-person support group during my primary treatment for breast cancer, but BCSM, and the informal mentoring relationships that developed out of it, were vital to me during the past year. So much so that it's hard for me to imagine what it would have been like to have had my first experience with cancer in a time when Twitter, and BCSM, did not exist.

Thank you, founding women of BCSM.

• [Elissa Malcohn]

  I am tremendously grateful for all the grassroots support networks out there.  As a long-term caregiver I participate in #carechat and am active on Caregiving.com.  There’s a list of healthcare tweetchats at http://www.symplur.com/healthcare-hashtags/tweet-chats/