San Antonio Breast Cancer Symposium – A Patient Advocate’s POV

SABCS-2013It was extremely exciting being at the 36th annual Breast Cancer Symposium in San Antonio (SABCS). I was hoping to go on Twitter during the Symposium but was having a lot of trouble during the conference with the wifi signal. I decided to concentrate on the presentations and when I could find information being reported on them I knew that those that could not hear the presentations live wanted to know what was happening there. All of the speakers were incredible. There are tons of studies that were reported in the news that I tried to “scoop” as many as I could at: Breast Cancer News.

ChemoBrain1As much as I try to deny that there is any left over chemobrain from the dose-dense ACT (Adriamycin, Cytoxan, Taxol) chemotherapy that I did for treatment of my primary breast cancer in 2005, I have to admit that as much as I want to have my brain functioning at full capacity, there are residual effects that happen and I can’t hold so much information all at once. At times things slip away. I have particularly noticed that I make errors with numbers. With that in mind I accept my limitations. I tried to be as present as I could during the conference, and I hope to be careful when putting dates with numbers so as not to make careless errors. I plan to attend again next year and I am determined to keep myself on the Twitter feed while I take in the presentations and have an assistant help in finding the articles that represent the presentations so that those who can’t attend can get the information.

blog_iconIf I wait too long to blog about SABCS I know that I will write something so long that it will be too much to read. I am going to post more than one post so that I can keep this at a reasonable length. I am also going to suggest some great links to other blogs and if you wish to follow them just click on the ones that are highlighted in a different color and it will take you to these other great places for information. To read some terrific explanations of some of the studies take a look at Dr. Susan Love’s Act with Love Blog, San Antonio Breast Symposium Day 1 – Day 3, with a great round up including the Survivorship Presentation on Day 3, #BCSM blog presentations by Dr. Julie Gralow, SABCS Highlights, and SABCS Highlights by Dr. Robert S. Miller.

28627_119149311460178_7118937_aI did miss seeing Dr. Susan Love at the conference live but her round up of SABCS is amazing! I saw Dr. Gralow presenting and had the good fortune to meet Dr. Miller in person. I loved seeing the people I know from social media live at the conference. It turns out, thanks to connections on Twitter, that I was fortunate to share my room with a remarkable breast surgeon, Dr. Dana Abraham. It’s so exciting to meet doctors that care about patients and want to understand this disease from their perspective. It is wonderful to see friends who are fellow patient advocates. I have some photos here. If I mention all the names this will really get very long!

IMG_5698Today, I want to concentrate on my takeaway from all the presentations from the perspective of a patient advocate. One of my favorite parts of the conference was the Case Discussions where the panelists included doctors who are experts in medical oncology, radiotherapy, and they also included a patient advocate. Here, doctors come up to the mike and present real case studies and the panelists give opinions and their ideas about what should be done about the cases presented.

IMG_5667 - Version 2It was exciting to see that the doctors included a patient advocate on the panel as it’s becoming clear to me that doctors are learning a lot from patient advocates. I am so impressed with how hard these medical professionals work to understand and help their patients. I am also very impressed with how many doctors are reaching out to patients with social media and including patient advocates by starting to bring them in to the conversation. Listening to the panel of experts recommending treatments, especially keeping track of all the trials that were being presented at the conference, was extremely impressive. Both the doctors and the patient advocates tried to come up with ways to help and I was really impressed with the fact that the atmosphere was focused on presenting all of the evidenced based information to patients about their options and making sure that patients are part of the process in deciding what they do for their treatment.

shutterstock_27416451I think it’s so important that patients make sure they are working with a doctor who keeps up with the latest information available for their specific case and allows the patient to make informed decisions by presenting the patient all the options. When a patient is diagnosed at any stage of breast cancer, there is so much information and it’s hard to sort it all out. Yet if a doctor just dictates the treatment without explaining the pros and cons of all the options, the patient is not being allowed patients to understand fully what choices are available. As patient advocates we want to know as much as we can about this disease because one size does not fit all. Every case is unique.

I was struck by a doctor who had a patient that was having trouble taking her tamoxifen. Her doctor really cared about trying to have her patient be compliant and the patient was having terrible trouble with the side effects. With this case the doctors had some ideas for medications and the patient advocate (Beverly Canin) also recommended alternative therapies. What struck me most was how compassionate the doctors were as they presented their cases as well as the suggestions coming from the panelist, especially when using all the trials presented at SABCS.

For anyone who has breast cancer, has been in treatment, or is in treatment for breast cancer and knows first hand about these awful side effects from so many treatments they can consider alternative complimentary treatments. A great resource for complimentary and alternative therapies is The Annie Appleseed Project,

Is-Chrysin-A-Good-Natural-Aromatase-InhibitorIn contrast to the incredible compassion that I saw from so many doctors, I saw a different approach from one of the case study presentations that had to do with AI’s and compliance of patients. The presenter seemed to want to be dismissive of the patient’s complaints about side effects with these medications. Without calling out the specific study or doctor presenting it, I was disturbed by his lack of compassion and how much he gave the impression that the side effects and his data seemed to imply the effects were probably more in the patients mind than as a result of the medication. Here was an example where a doctor needs to be more like the incredible doctors I was surrounded by as far as being compassionate and realizing these side effects are real.

IMG_5670I also love attending the Alamo Breast Cancer Foundation (ABCF) Hot Topics Mentor Sessions. They always have the best speakers reviewing many of the case studies presented during the day as well as other topics of interest to them. One of the panel discussions was taped and to see this great presentation go to: Breast Cancer Answers’ Video of SABCS Hot Topic Mentor Sessions.

One of the patient advocate questions dealt with asking what we can do as advocates. Clifford A. Hudis, MD the President of ASCO, Chief of Breast Cancer Medicine Service and an attending physician at Memorial Sloan-Kettering Cancer Center, had recommended that we keep writing to congress.

congressimagesI am a member of ASCO in Action and I recommend that everyone interested in being an advocate join this group. They give action alerts and pre-written letters to congress about issues important to all of us, especially in reference to oncology. I always take the letters and when they say “As an oncologist in your district” I change the words to “As a patient of an oncologist in your district” and send the letters off to my representatives. Another important organization to pay attention to is Breast Cancer Action. They also have important actions and letters that impact the breast cancer community. At Advocates 4 Breast Cancer we are working toward trying to get a program to make it easy for other advocates to write these letters, but for now please stay posted on this site for alerts to letters that we recommend you write. I was in agreement with Clifford Hudis, MD’s observation that he hears back from every person we write to in Congress. I send them via email and I am glad that they are paying attention.

IMG_5630I was also moved by a talk that Cate Edwards (daughter of the late Elizabeth Edwards) gave during a dinner with Novartis Oncology about her involvement with metastatic disease, recognizing the importance of the patient as well as the caretakers. Everyone knows how passionate I am about making sure no one with Metastatic Breast Cancer is forgotten.

545527_494545153891973_631458727_aAs breast cancer patient advocates Stages 0-4, we must always put those with Metastatic Breast Cancer (MBC) first and foremost in our minds and they should never be left to feel abandoned or alone. I wish there had been more at the conference focused on metastatic disease. There were some studies, but next year I’d like to see a stronger focus on research for MBC.

Sequestration has taken its toll of health science at the NIH and NCI. During the year things had to be scaled back 10-15% in labs. This hurts research because science relies on heavy funding. Once again this is where we as patient advocates in the US must keep paying attention to what is happening with the budget in congress and keep writing to congress to have our voices heard.

I am going to end this post as I will be posting some more thoughts in another installment. What a thrill it was to attend this conference live. I am also so grateful for the one-on-one meetings that I got to have with my fellow advocates and doctors.

Dr. Susan Love’s Research Foundation Teams Up

I received this in an email yesterday from Dr. Susan Love’s Research Foundation. Leave it to Dr. Susan Love to bring together Susan G. Komen, the Young Survival Coalition, and the Dr. Susan Love Research Foundation to collaborate on the collateral damage and side effects of Breast Cancer as part of the Health of Women (HOW) study. This is so exciting to have breast cancer organizations working together. Dr. Susan Love not only wrote about this concept but she is taking action.

There’s still time to participate with questions in this study so please read the release that Dr. Susan Love sent and get all of this great information including how you can join the conversation with Dr. Susan Love on Facebook, Wed October 2 at 9am Pacific Time and/or Twitter at 1:00 Pacific time.

Dr. Susan Love Research Foundation Teams with Susan G. Komen and Young Survival Coalition to Document the Collateral Damage of Breast Cancer

Image 2We’re pleased to announce the groundbreaking collaboration of three breast cancer powerhouses to document the short- and long-term physical and emotional side effects of breast cancer treatments as part of the Dr. Susan Love Research Foundation’s Health of Women [HOW] Study.

Those of you who have been following Dr. Love’s recent blog posts are aware of  the outpouring of interest in documenting the collateral damage of today’s breast cancer treatments and many of you have already participated by providing key questions about your own experiences.

More data needs to be collected to provide the scientific community with the most robust cohort from which to derive and analyze the true cost of the cure. In the spirit of collaboration, the Dr. Susan Love Research Foundation reached out to Susan G. Komen and Young Survival Coalition as well as other advocacy groups to ask for their help in spreading the word.

YoungSurvivalCoalitionLogoSusan G. Komen and Young Survival Coalition have agreed and are inviting their constituents to share their experiences with collateral damage from treatment and to participate in the HOW Study as a means of identifying the causes of, and prevention strategies for breast cancer. This groundbreaking collaboration also demonstrates that different breast cancer organizations can work together on important issues.  We welcome all breast cancer and cancer groups to join us.

HOW_Logo_onlyQuestions about collateral damage from breast cancer can be submitted through October to http://www.questionthecure.org. Anyone interested in being part of this initiative can register for the Health of Women [HOW] Study and complete the basic questionnaires on personal health and/or breast cancer diagnoses. When the collateral damage module is complete and online, participants will be notified by email.

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To give you an opportunity to learn more about this groundbreaking collaboration, Dr. Susan Love will host a Facebook chat (Wednesday, October 2 at 9:00 a.m. PDT) and a Twitter chat (Wednesday, October 2 at 1:00 p.m. PDT).

#SCORCHY #BCSM #SCOTUS #ASCO13 #BCANS

Social Media SignThis was an incredible week for breast cancer patients, advocates, doctors, bloggers, and what has happened in breast cancer news and social media. I started on Twitter a year ago and for those of you who don’t know about the format, Twitter is a place where you pick a name for yourself (mine is @a4breastcancer-A4BC was taken) and then there are #hashtags which are names of groups or topics.

Because I find and put together breast cancer news articles as part of Advocates for Breast Cancer (A4BC), I created a new hashtag, #BCANS (Breast Cancer News). I am learning a lot about what ends up as news as well as trying to sort through articles that I hope will be of interest to fellow medical professionals, researchers, advocates, patients, and organizations while I try to decide what is newsworthy. This has been an incredible week of news combined with social media.

bcsmcosI am very proud of being part of the #BCSM (Breast Cancer Social Media) community which meets on Monday nights from 9-10 Eastern Standard time. It is an incredible group moderated by Dr. Deanna Attai (breast surgeon), Alicia Stales and Jody Schroeger and this week we had a review of what happened in breast cancer at the annual meeting of #ASCO13 ( American Society of Clinical Oncology Meeting 2013, Chicago May 30-June3).  I was thrilled because I had followed and gathered #BCANS (breast cancer news) everyday at #ASCO13. I also used and followed the #ASCO13 Twitter feed.

BCSM (1)The #BCSM meeting Monday night was so exciting because we had almost as many doctors as patients and patient advocates on the chat including the President of ASCO , Dr. Clifford Hudis (who is also the Chief of Breast Cancer Medicine at MSKCC-(Memorial Sloan Kettering), Dr. Seisenberg (oncologist), Dr. Diane Radford (breast surgeon), Dr. Bob Miller (oncologist), Dr. Matthew Katz, (radiation oncologist),  Dr. Krupali (medical oncologist), Dr. Dana (breast oncologist), Dr.Anas Younes (lymphoma expert), Dr.Damodhar (surgeon), and Dr. Naoto Ueno (medical oncologist). (I hope I didn’t miss anyone and I simplified their specialties as otherwise this would be very long!) It was so exciting with all the Doctors and patients interacting, talking about the breast cancer highlights from #ASCO13.

What we discussed is in trials and things we can be hopeful for in the future as well as certain things that may impact our specific cases that we can talk to our own oncologists about. I have mentioned how impressed I am with ASCO because the organization recognizes the importance of patient advocates as well as social media and it relationship to current oncology practices.

What was so great about the #BCSM chat was that patients and doctors could come together and discuss highlights from the #ASCO13 meeting  and I love that the doctors are willing to listen to patients, our thoughts, stories as well as ideas and we all learned something together. I am honored that theses doctors care about patients and come together for this type of meeting and I am so impressed with the people I am meeting as a result. To see the transcript follow this link: #BCSM Transcript- Highlights from #ASCO13

david-jay-the-scar-project-04I am so excited with what’s happening with social media. I am so proud of my friend and fellow blogger Scorchy Barrington  at: The Sarcastic Boob.  Scorchy started a petition on change.org opposing Facebook for not allowing photographs from famed photographer David Jay, that showed post-mastectomy photos of women known as The Scar Project, because they violated Facebook’s terms of service. Imagine my delight as I am gathering the news on Wednesday and I see on my news feed an article in the Chicago Tribune that talks about Scorchy’s change.org petition, where she got over 21 thousand signatures of people who felt the pictures belonged on Facebook. I rushed to get the message out on Twitter and as I was also getting it on Facebook there were so many news feeds of articles including CBS News, FOXThe Daily News, The Daily Mail, NBC, ABC , (to name a few). coming out at once that I could hardly keep up with them. Then there was a burst of energy on Twitter and Facebook with so many people cheering for Scorchy and another great friend and blogger AnneMarie at: Chemobrain…In the Fog, started a campaign to get #Scorchy trending on Twitter.

FacebookFacebook posted this statement: “We agree that undergoing a mastectomy is a life-changing experience and that sharing photos can help raise awareness about breast cancer and support the men and women facing a diagnosis, undergoing treatment, or living with the scars of cancer. The vast majority of these kinds of photos are compliant with our policies.”

Thanks to brilliant work of Scorchy they will now show these important photos as well as Annmarie Giannino-Otis’s photos at Stupid Dumb Breast Cancer. If you haven’t seen The Scar Project photos, I recommend you look at it here: The Scar Project

Scorchy was quoted saying, “We want the world to know that breast cancer is not a pink ribbon — it is traumatic, it is life-changing, and it urgently needs a cure.”

blog_iconScorchy has breast cancer and is Stage IV. She is an amazing blogger, honest, funny, engaging and what she did with this petition and getting all of this news in mainstream media is so fantastic, because patient advocates have worked so hard to let the public know that breast cancer is so much more than a pink ribbon, while all of this “pinkwashing” about the disease distorts some of the harsh realities about breast cancer. These photographs depict real women who know the truth about mastectomies which make scars and are many times lots of surgeries (my case), with different women making difficult choices about whether to do reconstruction and some women especially who get IBC (Inflammatory Breast Cancer) can’t even try reconstruction because IBC happens on the breast skin. As I have said so many times this disease is killing one woman every 14 minutes in the US alone.

pinkcultureThere’s a lot of “pinkwashing” of the disease and so many woman who have had breast cancer hate the color pink because of what has been done to the color by representing an oversimplification of a pretty pink disease. As a former ballerina I still love the color pink but I detest “pinkwashing.”

Getting back to this exciting week and all the action on social media, I was still so happy when I got up on Thursday after all the excitement that #Scorchy brought and while I was preparing #BCANS articles, #SCOTUS (The Supreme Court of the United States) ruling came down and 9 judges voted against Myriad genetics.

I have written about the Supreme Court Case in which Myriad Genetics was challenged because they had a patent on our human BRCA genes. This patent allowed them to be the only ones to do this gene test which kept other researchers and companies from conducting research for better tests that would help women with treatment decisions by knowing if they are at high risk of developing this genetic form of breast and ovarian cancer. While Myriad held the monopoly on the test, other companies were prevented from developing better and less expensive tests and more research into other genes.

Outlaw human genes_nThe case originally in 2009 brought together many diverse plaintiffs in New York Federal Court that included the ACLU,  the Association for Molecular Pathology, the American College of Medical Genetics, individual researchers; women’s health and breast cancer advocacy groups, including Breast Cancer Action and Our Bodies Ourselves; and women who have breast and ovarian cancer. Originally they ruled against Myriad but the case was overturned a year later in an appellate court. Absent from the list of plaintiffs was the Susan G. Komen Foundation who lists Myriad Genetics as a donor to their organization.

One of the plaintiffs, Breast Cancer Action (which I am so proud to be on the Speakers Bureau) is a national grassroots education and advocacy organization working to end the breast cancer. They do not accept any donations from companies, corporations or anyone who profits from or contributes to the breast cancer epidemic.

blog-brca-decision-500x280-v02The Supreme Court ruled against Myriad Genetics by ruling that companies cannot patent parts of naturally occurring human genes. The ruling was complex and at the heart of it was the patent, but the result will help doctors, pathology labs, research, breast and ovarian cancer patients and those at high risk for the disease and will also help make the test more affordable. The test was very expensive (over $4000.00) and many women were uninsured, and those who carried insurance while doing the test were sometimes denied payment or had very high co-pays for the test. There is already a genetics testing company based in Houston that said it would offer the test for $995.00 called DNATraits. To see the decision go to: The Association for Molecular Pathology et al. vs. Myriad Genetics .

It was so much fun for all of us to get on Social Media cheering this monumental decision of the Supreme Court. I feel so connected to so many others including breast cancer patients, patient advocates, doctors, legislators, organizations, bloggers, and of course #Scorchy, that are working every day to help other patients, make the public aware about the realities of this disease,  get more funding for research especially for patients who are metastatic and doing difficult treatments every day to stay alive, and finally work to develop a vaccine that will prevent this horrible disease in the first place.

blog_iconIt’s been a fantastic week of news and  social media. My favorite end to the week will come out soon from my fellow blogger Marie at: Journeying Beyond Breast Cancer, where she will do the weekly round-up of some of the best blogs that came out this week. It’s really a great time to be connected to so many awesome people.

My Fantastic “Twitter” #BCSM (Breast Cancer Social Media) Community

Members of #BCSM Community after lunch from left to right starting from the top: Carmen, Liza, Lori, Dr. Attai, Me

For those of you that don’t use Twitter the # is a hashtag to refer to a group. The #BCSM (Breast Cancer Social Media) Community meets every Monday night at 9PM Est or 6PM PST to discuss different topics about breast cancer. I was always afraid of social media, but knowing that I am starting my non-profit organization called Advocates 4 Breast Cancer, I realized that I needed to get involved with social media. When I went to Washington DC for the National Breast Cancer Coalition Advocacy Meetings and Lobby Day in May of this year, I met other bloggers and took a class explaining how to use social media. The Twitter thing had me very confused but thanks to Lori who sat next to me and who blogs at “regrounding of chemo, cancer and red, red wine,” I signed up for Twitter and she told me about the #BCSM community,  It took me some time to realize they had these meetings on Monday nights and I am so grateful to Lori for telling me about them. She also invited me to meet some of the group and I met one of the moderators Dr. Attai as well as Carmen and Liza for lunch in LA a few months ago. To the right is the picture of us after our lunch meeting in LA.

We had a wonderful write-up in USA Today. It is so good that I am going to print it here. There is also a video that is worth watching included in the story. I am so proud to be part of this group.

To read and see the video of the full story click here: VIDEO & STORY

 

This is the final installment in USA TODAY‘s four-week series on breast cancer. The series looks at screening, treatment and support via social media.

7:40AM EDT October 23. 2012 – Twitter, perhaps best known lately as a source of Big Bird jokes, might not seem like the first place to look for a breast cancer support group, a boot camp in medical research or the seeds of a social movement.

Yet a weekly Twitter chat on breast cancer, launched just over year ago, has blossomed into all those things and more, participants say.

The online chat, known as BCSM — or breast cancer social media — has a growing following of men and women looking to share war stories, empower patients and change the national conversation on breast cancer.

MORE: Health and wellness coverage

Folks who join the chats “are amazing. And they tell each other so,” says co-founder and breast cancer survivor Jody Schoger, 58, of The Woodlands, Texas. “They find the best in each other and celebrate that quality.”

Robert Miller, a medical oncologist at the Johns Hopkins Kimmel Cancer Center In Baltimore, is a frequent guest expert on BCSM. Miller says he understands how those unfamiliar with Twitter might be “skeptical that exchanging 140-character messages with a group of strangers for an hour every Monday night would be an effective tool. But it really is.”

Psychologist Ann Becker-Schutte, a frequent guest expert on BCSM, says the support group take its positive tone from its leaders.

Schoger and her fellow organizers — who became friends online months before ever meeting face to face — each bring unique talents, says Becker-Schutte, who specializes in helping people with serious diseases.

Schoger is a writer with a background in public relations. Co-founder Alicia Staley, 41, is a three-time cancer survivor from Boston, as well as an information technology analyst and online community manager. The third member of the team, California breast surgeon Deanna Attai, joined BCSM during its second chat and quickly became a co-moderator.

A well of support

Each moderator works hard to keep conversations on track and avoid the pitfalls of traditional support groups, Becker-Schutte says. While other support groups may allow people to vent their frustration, she says, BCSM provides a way for people to transform those frustrations into action.

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.”

Staley says the group’s success has surprised her. There’s no formal promotion. Instead, early participants often stumbled across the chats after searching for keywords — known on Twitter as hashtags — such as cancer.

“This is something incredible that has grown out of a hashtag,” Staley says.

The virtual community has spent more than 600 hours in conversation since their first chat. Schoger alone devotes about 15 hours a week to BCSM, and another 10 more to her blog, Women With Cancer.

The key to forming a close-knit community, Schoger says, is listening. She notes that many organizations and companies use social media such as Twitter as a one-way broadcasting system to put out a message of the day. The most successful people in social media foster real conversations, she says.

Becker-Schutte notes that the women’s fellowship doesn’t end with their hour-long chats. BCSM leaders monitor the group’s ongoing conversations. “If someone is having a hard time, it isn’t long before someone responds.” Becker-Schutte says.

Conversations such as BCSM fill a huge void, Attai says. She began chatting with breast cancer patients after noticing a 1 a.m. conversation between two women about Paget’s disease of the breast, a rare form of cancer that Attai has treated.

“Patients just aren’t getting the information they need,” Attai says. “Two women shouldn’t have to go online in the middle of the night.”

And although individual tweets are brief, the group delves into deep subjects. BCSM has tackled issues such as parenting and maintaining a career through breast cancer treatment; emotions such as anger, anxiety about recurrence and survivor’s guilt; and post-treatment complications such as “chemo brain” and lymphedema, which causes arm swelling.

Staley, who developed breast cancer twice after receiving radiation for Hodgkin lymphoma, says many patients feel alone. She divides her cancer experience into three phases: diagnosis, treatment and “after.”

“The diagnosis comes at you fast and furious,” says Staley, who blogs at awesomecancersurvivor.com. “You make your decision for treatment. You get to the end of the treatment plan, and you get a pat on the back and off you go into the world. I’ve been through this three times, and the ‘after’ part is the hardest. You are pushed back into the real world and you have to redevelop your framework for connecting. That’s what this community has done, to prop me up post-treatment, to get me back into the real world.”

The Internet is teeming with online support groups, of course, including dozens just for breast cancer, Schoger says. Hundreds of cancer survivors across the USA now blog about their experiences.

Online communities can be especially powerful for those with rare diseases, who often may not be able to find other people with their condition in their communities, says Terry Lynn Arnold, of Friendswood, Texas.

Arnold, who has a rare type of breast cancer called inflammatory breast cancer, says she has formed close bonds on Facebook with women she would likely never have met in person.

Doing their homework

BCSM stands out from most other support groups, however, because of its rigorous focus on medical evidence, Attai says.

Given that myths and misinformation can spread like wildfire online, Attai says it’s crucial for BCSM to provide accurate information that’s supported by strong science. The group regularly dissects the latest research and routinely recruits experts. Some of the more science-heavy topics have included clinical trials, hereditary breast cancers and how to avoid “voodoo medicine.”

In addition to Miller and Becker-Schutte, guest experts have included Matthew Katz, director of radiation oncology at Lowell General Hospital in Massachusetts; Julie Gralow, director of breast medical oncology at the Seattle Cancer Care Alliance; and St. Louis breast surgeon Diane Radford.

Although the group has plenty of compassion for people with cancer, members have little patience for hecklers, self-promoters or spammers, Staley says.

“There are plenty of angry communities on Twitter, but we’re not one of them,” Attai says. “If someone wants to pick a fight, they will quickly learn that’s not what we are about. If someone wants to come and promote broccoli extract (as a cure for cancer), we will call them out on that, and they will go elsewhere.”

Connecting across platforms

Attai and other doctors say the chats have given them a better sense of what patients are going through, and “how much my patients were holding back from me.”

And while the community may be virtual, the emotions expressed are palpable, especially when participants are in crisis, or grieving the loss of a loved one, Schoger says.

Last February, BCSM lost two of its members in one day. Organizers scrapped their planned chat and devoted the entire hour to remembering the two women. “We had what can only be called a virtual wake,” Schoger says.

And while BCSM isn’t political, the community has developed a strong voice on key issues in breast cancer. The group regularly criticizes “pinkwashing,” or the commercialization of breast cancer, which is invoked throughout October to sell products. Breast cancer bloggers are taking up the issue, as well, so much that “pink-ribbon fatigue” is becoming a common phrase.

Members of BCSM are also “fearless friends” to women with metastatic disease, which has spread to other organs and is incurable. Such women often feel unwelcome and abandoned by other breast cancer groups, Attai says.

“It seems like the community as a whole have turned their backs on men and women with metastatic breast cancer,” Attai says. “If you don’t fit into this narrow window with pink, ‘happy’ cancer, then the community has no place for you.”

Partly due to efforts like BCSM’s, women with metastatic disease say their concerns are far more visible this year than just a year ago.

Lessons spread

BCSM’s founders say they would love to help other patients start or expand similar communities. Patients with very aggressive kinds of cancer, such as ovarian or brain tumors, often aren’t healthy enough to form the sorts of advocacy groups that exist in breast cancer, Staley says. Often, these patients go immediately into aggressive treatments, which can make it difficult for them to organize support groups.

There are more than 2 million breast cancer survivors alive today, however, and many of them are relatively young and tech-savvy, she says.

Creating more communities like BCSM, however, would require finding moderators who are equally compassionate, dedicated and informed, Becker-Schutte says.

“They’re pretty amazing,” Becker-Schutte says. “They are doing for the community what they wish had been available for them in their initial diagnosis and treatment.”

Coming up on Twitter

Join the discussion about breast cancer screenings #abcDrBchat at 1 p.m. Oct. 30.