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1 July 2019

July 4th 2019 marks 8 years for the #bcsm (breast cancer social media) community on Twitter. #bcsm was started by two breast cancer patient advocates, Alicia Staley and Jody Schoger. They initially met on Twitter while participating in weekly tweet chats that focused on healthcare and social media (#hcsm). Sensing a need in the breast cancer patient community for a forum to discuss their unique issues and concerns, they held the first #bcsm chat on 7/4/11, and the rest is history.

#bcsm is the first and longest-running cancer support community on Twitter. Alicia and Jody were very clear from the start that they wanted the chats to be open to all and to cover both survivorship topics as well as the latest science. That mission continues today.

I actually missed the first chat (it was a holiday!) but joined in on the 2nd one and was asked to participate as co-moderator a few months later. I have been honored with a front-row seat to the patient experience all these years. Women and men participating in the chats share their experiences in a way that is different from what oncologists usually see in the exam room – the conversations are often less guarded and more raw. These women and men have made me a better physician.

Jody died due to metastatic breast cancer in 2016 at the age of 61. The weekly chats continue, and serve as a living testament to the vision of two women who prior to 7/4/11 had never met in person. There are now several other cancer-specific patient communities on Twitter, including for gynecologic and lung cancers and for brain tumors. Alicia and Jody were brought together in the online space by shared interests, experiences and passion – what has resulted from their initial discussions is nothing sort of amazing.

USA Today – Breast Cancer Survivor Group is a Social Movement

3 August 2017

Alicia Staley and Jody Schoger met on Twitter in 2009. After a series of online interactions, they were inspired to create the #bcsm community. The first #bcsm tweetchat took place on July 4th, 2011.

Alicia and Jody brought together patients, physicians, researchers and others who shared an interest in providing education and support for all impacted by breast cancer. Without Alicia, Jody and the #bcsm community, I would have never met Lori Marx-Rubiner, who died yesterday due to metastatic breast cancer.

Lori and I crossed paths during one of the early #bcsm tweetchats. She was the driving force behind the early LA tweetups, and in 2013 she wrote about one of our get togethers, noting that “it is at once an uneventful and deeply powerful few hours.” Her caption next to our group photo says it all: “How fabulous is this group??”

Shortly after we met online, Lori and I discovered that we lived fairly close to one another. We started meeting every few months for lunch or dinner. She was always very matter of fact and had a great way of breaking down problems or challenging situations.  She was a great listener, and had a wicked sense of humor. After her diagnosis of metastatic breast cancer, we continued to meet, and our conversations delved deeper into issues of life, death and our own mortality. After my close friend and colleague was killed in a freeway accident, she was the first person I turned to when I was ready to open up and talk. As an “expert patient”, she volunteered her time to come to my office for a “lunch and learn” with my staff to discuss some common frustrations that patients experience when trying to navigate the healthcare system, so that they could better understand the patient’s point of view. She was an incredible and inspiring woman and I am so thankful that she was in my life.

When Donna Peach died in 2013, I posted some thoughts about how incredible it was that something like Twitter could bring people together in such a meaningful way. The connections that we make online translate into something very special when we meet “in real life”, or IRL.  The virtual “group hugs” are wonderful, but the IRL hugs are truly magical. Lori and I shared many of those magical hugs.

Rest in peace, Lori. Rest in peace Jody, Donna, and all of the other women and men taken from this world way too soon. You are remembered with love. Thank you to the Universe for bringing Alicia and Jody together online. And thank you to Alicia and Jody, who had the vision to create such a special place for all of us – the fabulous online community that is #bcsm.

1 August 2016

A study published in JAMA Oncology demonstrated that women who were engaged in social media after being diagnosed with breast cancer were more likely to express positive feelings and satisfaction related to their treatment decisions. The authors surveyed 2460 newly diagnosed breast cancer patients about their social media use including texting, email, Facebook, Twitter, and other sites. Approximately 41% of women reported some or frequent use of social media for online communication. They noted that the various social media communication platforms were used differently. Text and email were more frequently used to inform of a new diagnosis. Other social media sites and web-based support groups were primarily used to interact with others about treatment options and recommendations. Women also reported using all of these platforms to express negative emotions regarding their diagnosis and treatment.

The authors noted that women who were younger and well educated were more likely to use social media for communication. Black and Latina women were less likely to use social media compared to Caucasian and Asian women. These disparities have been demonstrated in other studies evaluating the use of social media by cancer patients and research is ongoing to determine how to best bring the advantages of online communities to older patients, minorities, and those who are less educated.

There is a lot of misinformation and dangerous information online. However, there are a large number of very reputable sites including support communities. As many of you know, I am actively involved as a co-moderator of a breast cancer support community on Twitter (#BCSM). We have previously shown that participation in the #BCSM community increases knowledge and decreases anxiety. While social media use is not for everyone, there is a growing body of literature suggesting that the various online communities provide value to newly diagnosed cancer patients.

30 July 2015

A study published today in the Journal of Medical Internet Research demonstrated that breast cancer patients participating in an online support community based on twitter had increased knowledge and decreased anxiety regarding their condition.

The Breast Cancer Social Media (#BCSM) community was founded in 2011 by two breast cancer survivors. Weekly tweet chats are held on various topics related to breast cancer diagnosis, treatment, and survivorship. I have been co-moderating the chats since October 2011.

We decided to study the group because while the popularity had grown, we did not have any objective evidence regarding the effectiveness. While this was a small study with some limitations, it is one of the first to demonstrate that patients participating in an online support group actually benefit from participation. This demonstrates that participating in an online group may be a reasonable alternative to in-person support groups for some women.

27 December 2013

I was recently featured in the December 2013  issue of Oncology Times, in the Profiles in Social Media section. I was interviewed by Lola Butcher, and in case you are not able to access the article, I have re-posted it here. This explains how I became involved in social media and how this involvement has impacted both my professional and personal life.

Oncology Times:
doi: 10.1097/01.COT.0000441837.24257.46
Lola Butcher

Twitter Bio: Breast Surgeon, #BCSM Co-Moderator, Teacher, Advocate, Author, Organic Vegetable Gardener, and Gluten-Free
Facebook Bio: Dr. Deanna J. Attai is a breast surgeon dedicated to state-of-the-art minimally invasive care for women with benign and malignant breast disease. Areas of expertise include ultrasound, minimally invasive breast biopsy, cryoablation for benign and malignant tumors, and accelerated partial breast irradiation. Dr. Attai is actively involved in research and patient and physician education in addition to her busy clinical practice.

Deanna Attai, MD, a private-practice surgeon in Burbank, Calif., is best known in the social media world for her leadership in the Breast Cancer Social Media community, including her role as co-moderator of the BCSM TweetChat every Monday evening. She is featured in 25-and-counting videos on her YouTube channel. She blogs regularly about breast cancer topics on her website; shares personal reflections on her wellness blog; and promotes breast cancer awareness and knowledge on her Facebook page.

Like many physicians, she initially was dubious about the benefits of social media and waded in only to support a professional organization. A lot has changed since then.

“If you had told me a few years ago that not only would I be on Twitter, but I would be driving an hour and a half to the funeral of a woman I got to know through Twitter and that I would have this huge following on social media, I would have never believed it because this is so far removed from anything I have done previously,” she said.

“But this has changed me personally, it has definitely changed me professionally, and all for the better. And I can’t imagine practicing without it at this point.”

How did you get involved in social media?
“It’s all the fault of the American Society of Breast Surgeons [ASBS]. I am chair of the communications committee, and in 2011, the staff person I work with and I thought that we might be able to use social media to increase the visibility of our organization and also offer patient education.

“I had to go before the board of directors and explain why, as an organization, we need to be involved in social media. And I can tell you, I got a lot of blank stares at that meeting.

“Before I went to the board meeting, I set up a Facebook page for my practice. And then I opened a Twitter account, and I just started following and listening. I followed a lot of cancer organizations, I followed a lot of news media organizations. I started following some professional organizations. And then, I started noticing the conversations that were going on specifically related to breast cancer among patients and advocates.

“The first time I realized that I really have a role on Twitter was one night when two women on Twitter were discussing one of their friends who had just been diagnosed with Paget’s disease. One said, ‘Her doctor told her she needs a mastectomy, but I also read that maybe she could get an MRI.’ And I just sort of watched these women with a little bit of horror, thinking, why are doctors not answering these questions? So I kind of butted in and said, ‘I’m a breast surgeon, can I give you any guidance?’

“And I ended up doing the same thing that I do day in and day out if a colleague or friend calls me and says, ‘My mother was just diagnosed—what do I need to do?’ I explained the usual workup for Paget’s disease and the surgical options, depending on what the MRI showed. I found out where in the country she was located, and I got on the American Society of Breast Surgeons website to find a couple of ASBrS members in the area in case she wanted a second opinion.

“I got an email from that woman about a month later, saying the patient had the MRI, the cancer was localized, she had a lumpectomy—and thanking me for my help. That was when I realized there are so many patients who are just not getting the information they need from their physician, and they are going online to look for information whether we are there or not.

“So I think it’s part of our responsibility as physicians to make sure that the information is accurate, and that people are getting the answers they need. And even if we just raise a couple of questions that they can take back to their own physicians, then we’ve done our job.”

The #bcsmchat on Twitter is the envy of every medical community that is interested in social media. What makes it so successful?
“Two breast cancer survivors who are very active on Twitter—Jody Schoger [@jodyms] and Alicia Staley [@stales]—started the breast cancer social media weekly chat in July 2011. I missed the first one, but I joined the second, and basically have participated ever since. I came on as an official co-moderator in October 2011.

“The success is due to the integrity and the vision of Jody and Alicia. When they first found each other on Twitter, they realized that no one was really talking about breast cancer in a constructive way. A lot of times the people who are online looking for information about cancer have not had a pleasant experience with their diagnosis and treatment and they need to discuss issues or problems. So Jody and Alicia sought to provide a supportive environment and evidence-based information and avoid perpetuating media hysteria and misinformation.

“The community essentially polices itself. Some people come on to the chat trying to promote their specific agenda and companies come on to promote their products, and that gets shut down very quickly.

“We are having docs join in left and right, and it’s fantastic. The patients absolutely love it because they have this whole network of specialists that are available to them, even outside of chat hours. Patients sometimes send out a tweet asking a question about a study or something they have read, and they will tag a couple of us and we all respond. It provides us a good opportunity to help empower and educate patients.

“Jody, Alicia, and I come up with weekly topics. I tend to take the lead when we are talking about medical things. For example, when we did a chat based on the American Society of Breast Surgeons’ meeting in May and the American Society of Clinical Oncology Breast Cancer Symposium in September, I basically rounded up the docs who were going to be involved, came up with the topics, and I moderated.

“If Jody is leading the discussion on a certain topic, I’ll be the one in the background, fielding the side questions or the things that may not be exactly pertinent. So we often have multiple conversations going on at once. It often takes the three of us to keep it under control.

“One week we had a topic scheduled, and two of the group members, both with end-stage metastatic disease, died that morning, within hours of each other. So, that night we spent most of the chat talking about them—the issues of death and dying, but also honoring our members.

“Jody and Alicia and I all kind of patrol the hashtag (#bcsm) during the week. People will send out tweets using the hashtag—maybe it’s someone who has written a blog post, maybe it’s somebody posting an article, sometimes it’s someone saying, ‘First day of chemo today; I’m scared.’ We call it our ‘bat signal,’ and we tell people if they have any questions or issues during the week, just send out a tweet with #BCSM and we’ll all come running.”

How has social media affected your practice?
“You don’t use social media to get patients. I don’t think anyone will come to me just because I have a good Facebook page or because I’m on Twitter. But Twitter gives me a huge network—just like it does for the patients—of specialists all across the country that I draw from, personally and professionally, for my own education and for what I can provide to my patients. And these are some of the leaders in their field. So I have access to the best and the brightest in medical oncology and surgery and other specialties.

“Also, the interactions I have with patients on Twitter have made me realize just how difficult our treatments really are for them. Of course, we see the patients who come to our offices and we ask them questions, but when we hear these women talking online, it lets us see what happens behind closed doors. It gives us a window into what really is going on with our patients and how our treatments and our words really affect them.

“This has changed the way I interact with my patients. I am much more aware that they are putting on their happy face when they come into the office. The reality is I just have to dig a little deeper to get to the issues that are concerning them.”

What is the #bcsm-LATweetup?
“There are several of us who are in southern California, and one of the #bcsm members came up with the idea that we should all get together. So maybe five or six of us met—that’s a Tweetup—and it was like we were all long-lost high school friends.

“When we scheduled the next one, another member, Donna Peach (@danceswithpens), said she wanted to come. She was a writer by trade and a dancer and such an incredibly warm and loving person that we all really gravitated towards her.

“By the time our TweetUp was scheduled, it was clear from Donna’s blog and her tweets that she was not well and probably towards the end stage. While we were sitting at the restaurant waiting for her, one of our group, Lori Marx-Rubiner (@regrounding) got a text saying Donna’s husband couldn’t find a handicap ramp—Donna was in a wheelchair by now—and they were going to turn around and go home. And Lori got up from the table, ran out, and basically stopped traffic to help get Donna out of the vehicle and wheel her up to the table. And we were all together for about an hour.

“Donna made such an impression on us that when she passed, it was like we had known her all our lives. Three of us drove down to the funeral. We had known her for only a little while, but she was a family member.”

What advice do you have for physicians who have not yet tried social media?
“When I started using Twitter, one of the first things I did was look at organizations like the American Cancer Society and check who is following them and I would start following some of those people. That led me to a few patients and advocates who seemed to have a prominent voice, and I looked to see who was following them and who they were following. And that is how I started figuring how who I need to listen to. There were many I started following initially whom I later un-followed because their voice wasn’t anything I wanted to hear.

“The best way to start is just to go in and look and listen. And you will figure out where your community or where your niche is. Or you may never say a word. You may just use it to soak in the information, and that’s perfectly fine. The whole world is open to anyone, which is incredible.

“Also, don’t be afraid as a physician in social media to humanize yourself. I put a lot of my garden stuff on my blog and on my Facebook page. I’ll get more ‘likes’ when I post vegetables from my garden than any breast cancer story that I post. And the feedback that I get, both from my patients and from the people that I haven’t met but who follow me online, is ‘Oh, my gosh, the doctor is a real person.’”

29 September 2013

I had the very unique opportunity to participate in a panel discussion at Stanford’s MedicineX conference, which is organized by Dr. Larry Chu. “MedicineX is a catalyst for new ideas about the future of medicine and health care. The initiative explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health.”

Read more

06 April 2013

Today I had the privilege of attending a memorial service for a woman that I met only once. I initially got to know her on Twitter. I attended the memorial service with 2 women who I also met on Twitter.

Yes, Twitter.

If you had asked me about Twitter 2 years ago, I would have said that it was about celebrities talking about what they had for lunch. I wasn’t interested, and I certainly didn’t have the time. For various reasons I set up an account, started listening, and then started tweeting and interacting. And in doing so I stumbled upon the most remarkable community. Not just a group, and so much more than a chat – a real community. I got to know some incredible people. Online.  A common criticism of online interactions is that they are superficial and not “real”.  My experience has been the complete opposite. We’re drawn to each other due to common experiences and common goals. Those relationships and bonds are solid, made even more so when we have the opportunity to meet “in real life”. We are there for each other, during good times and bad, for better or worse. We are #FearlessFriends.

Donna Peach passed away due to metastatic breast cancer on March 26, 2013.  I initially got to know Donna her through her blog. She was a gifted writer, a dancer and so much more.  One thing that was clear from her writing was that she loved life and everything about it. When we met approximately 2 months ago, even though she was suffering due to the progression of her disease, we were all struck by her beautiful smile and her incredible spirit. She touched us all – I made the comment after we met that it seemed like Donna had done a little bit of everything – and all of it with a huge smile on her face. Lori wrote about the meetup, capturing Donna’s spirit.  I would never have met Lori if it were not for twitter, and we live less than 10 miles apart. Carmen also accompanied us to the service today – another lovely addition to my life. Jody, Alicia, and too many more to mention. All because of twitter. They have touched me personally and professionally.  I cannot imagine my life without these women.

The tears we cried today at Donna’s service were real. The hugs we shared were real. The sentiments expressed today by those that knew her well were the same that Lori, Carmen and I expressed. Don’t let anyone tell you that online relationships are not real. Some of them are. I only knew Donna for a short time, but I am grateful for the interaction that we had. I will treasure the memories and will remember her spirit.

Rest in peace, Donna Peach.