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.
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 firstname.lastname@example.org.