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

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A recent New York Times article discussed some of the cautions that cancer patients should be aware of when they turn to “Dr. Google” for advice and information.

According to Pew research, close to 85% of US adults are online, and 72% of internet users have searched for health information. The information patients find online can have a significant impact on how they manage their medical conditions.  

Unfortunately, the quality of online health information is variable, ranging from peer-reviewed evidence-based literature to quackery and scams. If it sounds too good to be true, it is. Superlatives such as breakthrough, miracle cure, and blockbuster – these should be warning signs. I’m not referring here to complementary therapy – treatments that can help mitigate side effects or that can improve quality of life – I’m referring here to alternative remedies that are being pushed as “the secret cure doctors don’t want you to know about”. 

For those interested in using the internet for research, ask your treatment team some basic questions first – know your tumor type and subtype (estrogen, progesterone, and Her2/neu status), as well as tumor stage. Once you have some basic information and initial recommendations, there are several good-quality medical sites related to breast cancer including:
– American Cancer Society
– National Cancer Institute
– cancer.net
– breast360.org
– breastcancer.org
Some additional resources can be found here.

In addition to information, a growing number of patients are turning to the online space for peer to peer and community support. Twitter and Facebook both have large breast cancer patient communities which can be a source not only of medical information and resources but also more personal advice for navigating the various stages of cancer treatment and survivorship. I have been honored to co-moderate a breast cancer support community on Twitter (#bcsm – breast cancer social media) since 2011, where we take pride in ensuring that the information shared is of high quality. In fact, in 2015 we showed that those participating in the weekly online chats reported increased knowledge and decreased anxiety related to their cancer treatment. However, it is important to realize that even within “closed” or “private” online communities, there is no true privacy or anonymity in the online space, and Facebook in particular has come under fire lately for their privacy and data security practices.

The internet is most certainly here to stay, and we are (thankfully) not going back to the days where the physician was the only one with medical information. Patients should be encouraged to be proactive regarding their medical care. As a physician, I feel that it is my responsibility to do my part to help ensure that when patients go online, they will find the quality information that they need and deserve – which is why when I’m not in the office or the operating room (or in my garden) you’ll often find me online.

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I am often asked why I take the time to post on social media sites, and the answer is simple – it’s a way to reach patients and others who are interested in the content. As physicians, one of our primary roles is patient education, and there is a limit to how many we can reach in our daily interactions. With more and more patients searching online for health information, I feel that it is important that credible and accurate information is readily available. Online patient communities not only benefit from a physician presence, but physicians also benefit from being exposed to different perspectives and points of view.

Today’s Health News Review podcast features several physician bloggers (including me!) discussing why they blog.

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I was just featured in the “Observations” section of the British Medical Journal. For those who are not able to access “Operation Chocolate” on the BMJ site, I have posted it here.

Biography: Deanna Attai, 53, is a breast surgeon in Los Angeles who puts patient empowerment high on her priority list. Born to a New York medical family, she was educated at Vassar College and Georgetown University and practised in Virginia for five years before moving west in 1999. She was president of the American Society of Breast Surgeons during 2015-16 and is assistant clinical professor of surgery at the University of California, Los Angeles. Patient communication, she says, is “one of the joys of breast surgery and part of what drew me to the field.” She co-moderates Breast Cancer Social Media, a Twitter based breast cancer support group.

WHAT WAS YOUR EARLIEST AMBITION? I thought that the best job in the world was professional athlete. Unfortunately, I wasn’t good enough at any sport. However, I was good at science, and I was drawn to medicine probably because of my father’s influence. Once I got to medical school, surgery was the only specialty that really captivated me.

WHAT WAS YOUR BEST CAREER MOVE? After four years at a large group practice in Washington, DC, I moved across the country to Los Angeles to join a small group general surgery practice. I didn’t know anyone in LA, and I moved out there alone. After 18 months I left that practice, went out on my own, and then transitioned from general surgery to a breast-only practice. Looking back, I don’t know how I took those leaps—I was pretty fearless back then.

WHAT WAS THE WORST MISTAKE IN YOUR CAREER? Not focusing enough on my own health, especially after I went into solo practice.

HOW IS YOUR WORK-LIFE BALANCE? “Balance” implies that everything is moving along smoothly. In reality it’s a very active process, requiring constant adjustments. I learned, the hard way, to respect my limits. I’m now fiercely protective of my free time: I say “no” more often, and I say it without guilt.

HOW DO YOU KEEP FIT AND HEALTHY? Moderate exercise, gardening, and playing with my kittens. I’m in bed by 9 pm most nights. I follow a (mostly) healthy, balanced, plant based diet. I do consider regular doses of chocolate critical to my health, although this makes it harder to stay fit.

WHAT DO YOU WISH THAT YOU HAD KNOWN WHEN YOU WERE YOUNGER? That it would all work out in the end. I shouldn’t have stressed so much.

DO DOCTORS GET PAID ENOUGH? It very much depends on specialty and practice setting. On balance, yes, but those in private practice can struggle.

TO WHOM WOULD YOU MOST LIKE TO APOLOGISE? My staff. They bend over backwards for me and for our patients, and I don’t always let them know how appreciated they are. Shout out to Maggie, Ana, and Laura!

WHAT DO YOU USUALLY WEAR TO WORK? Scrubs. I like to be comfortable.

WHICH LIVING DOCTOR DO YOU MOST ADMIRE, AND WHY? My father, who is a retired cardiac surgeon. As a high school student I accompanied him to the operating room, my first exposure to surgery. Tagging along with him on hospital rounds showed me a completely different side of him, and his gentle way with patients has been an inspiration.

WHAT IS THE WORST JOB YOU HAVE DONE? During a college summer break I worked as a waitress at an all-night restaurant—the type of place people go when they’re drunk and need food at 2 am. That was interesting.

WHAT SINGLE UNHERALDED CHANGE HAS MADE THE MOST DIFFERENCE IN YOUR FIELD IN YOUR LIFETIME? The field of breast surgery and breast oncology has progressed thanks to researchers who design innovative and forward thinking clinical trials and the courageous patients who participate in these studies. Clinical trial participants don’t get nearly enough thanks.

WHAT NEW TECHNOLOGY OR DEVELOPMENT ARE YOU MOST LOOKING FORWARD TO? Non-operative ablative therapy shows promise for selected patients. Ongoing studies are evaluating whether surgery can be eliminated in patients who exhibit an apparent complete response to neoadjuvant therapy. It may sound strange for a surgeon to look forward to the day when we operate less, but there you have it.

WHAT BOOK SHOULD EVERY DOCTOR READ? It’s very important that physicians know the history of the disease they’re treating: you can’t have a good appreciation of where we are until you understand how we got here. One of the best books I’ve read about the history of breast cancer is Bathsheba’s Breast: Women, Cancer and History by James S Olson. Find the book that captures the history of your specialty.

WHAT IS YOUR GUILTIEST PLEASURE? Chocolate and sleep. And I’ve learned not to feel guilty about either of them: they’re necessities.

WHERE ARE OR WHEN WERE YOU HAPPIEST? Where I am right now. I’m very content with my current life and situation.

WHAT TELEVISION PROGRAMMES DO YOU LIKE? As kids we weren’t allowed to watch typical sitcoms or other mindless shows, so I never developed a taste for those. I’m an NBA basketball fan, so I love the halftime and post-game shows. And I do watch House Hunters (that one should probably go under “guilty pleasure”).

WHAT PERSONAL AMBITION DO YOU STILL HAVE? I go back and forth about writing a book: right now it’s a low priority, but that could change overnight. I’d like to learn to cook well—what I do every night is pretty basic. But I’m catching my breath after some major professional milestones and changes over the past few years. The next adventure will come when I’m ready, and that could be tomorrow.

SUMMARISE YOUR PERSONALITY IN THREE WORDS: Practical, focused, and empathetic, with a healthy side of New York sarcasm.

WHAT IS YOUR PET HATE? People who don’t keep their word or who have hidden agendas. Just be honest.

WHAT WOULD BE ON THE MENU FOR YOUR LAST SUPPER? Chocolate fudge brownies with vanilla ice cream.

WHAT POEM, SONG, OR PASSAGE OF PROSE WOULD YOU LIKE MOURNERS AT YOUR FUNERAL TO HEAR? I don’t think that I want a funeral. People may or may not want to mourn, but I don’t want a big show. Go out with some friends for wine and chocolate. Plant something. Adopt a kitten or a puppy.

IS THE THOUGHT OF RETIREMENT A DREAM OR A NIGHTMARE? A dream, but I’m not ready for it just yet.

IF YOU WEREN’T IN YOUR PRESENT POSITION WHAT WOULD YOU BE DOING INSTEAD? Rescuing stray kittens and tending to an organic vegetable farm.

The post Operation Chocolate appeared first on Dr Deanna Attai.

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 4^th, 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.

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A study published in the journal Cancer concluded that women with larger social networks have better breast cancer (BC) outcomes. In noting that large social networks predict lower overall mortality in healthy populations, the researchers analyzed a group of women who were already participating in four cohort studies. They evaluated associations between social networks within 2 years of a BC diagnosis and outcomes. Among 9267 women, there were 1448 recurrences and 1521 deaths. 990 of the deaths were due to breast cancer. In the patients studied, they noted that:

• Socially isolated women were more likely to be Caucasian, college-educated and nulliparous (never had children)
• Socially isolated women were less likely to be physically active and were more likely to be smokers, drink more than the recommended amount of alcohol, and be overweight
• Women who were socially isolated were more likely to undergo lumpectomy and were less likely to receive chemotherapy and hormonal therapy
• There were no associations between social isolation and age, menopausal status at diagnosis, cancer stage, and treatment with radiation

Regarding outcomes:

• Women with smaller social networks had a higher risk of recurrence, BC specific mortality and overall mortality
• Adjustments for lifestyle and treatment factors attenuated the associations with recurrence and mortality, but the associations remained statistically significant
• Social network associations with recurrence and breast cancer specific mortality were stronger for patients with Stage I and II BC  compared to Stages III and IV
• Associations between social networks and outcomes did not differ based on age, time since diagnosis, ER/PR status, Her2/neu status, or treatment
• Being “unmarried / unpartnered” was associated with worse BC specific and overall mortality for older but not younger white women or non-white women (any age)
• Community ties predicted lower risk of BC specific and overall mortality in older white and Asian women but not in other groups
• Religious participation was not associated with outcomes

So what to make of this study and these findings? The first point to make is that this study notes associations, or correlations – not cause and effect. Cause and effect cannot be determined from this type of cohort study, and a randomized controlled trial to assess the relationship between social networks and breast cancer outcomes would be impossible. While the authors attempted to control for many variables, the study population was not representative of the average US breast cancer population. In addition, there was no assessment of the quality of the social networks, a point I raised in a CNN.com interview regarding the study.

Cancer treatment is challenging even for those with a large supportive social network. No one should have to feel they are going it alone – there are many resources for help and support, but you may need to ask (hard to do for many independent women!). However, if you are one of those women (like me) who keeps her social network very small, this study should not prompt more worry during an already stressful time.

Correlation does not equal causation, by Lisa Simpson:

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October is National Breast Cancer Awareness Month (NBCAM), which means pink is everywhere. Stores start setting out pink merchandise towards the end of September, and the displays often rival Christmas merchandising. How did this happen?

The original pink ribbon was actually peach. A woman by the name of Charlotte Haley made them in her home, and handed them out with cards stating: “The National Cancer Institute annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up our legislators and America by wearing this ribbon.” Ms. Haley was then approached by SELF magazine and breast cancer survivor Estee Lauder, who wanted to use the ribbon as part of a breast cancer awareness issue. Ms. Haley turned them down as she didn’t want her efforts to become overly commercialized. As the magazine and Ms. Lauder needed a symbol, the pink ribbon was born. The Susan G. Komen Foundation handed them out at their 1991 race, and in 1992 it officially became the symbol of NBCAM.

Many women who have been treated for breast cancer wear pink to signify their struggles with the disease. Family members and friends often wear pink to show their support of a loved one. For some, wearing pink is an important show of strength and solidarity. However, not everyone feels comfortable with being “branded” in such a way – a patient once asked me “I don’t HAVE to wear pink, do I?” Men with breast cancer have traditionally been left out from such movements, although the pink and blue ribbon now is used for male breast cancer awareness campaigns.

We all want do do something to help end a disease that impacts so many. Many organizations host  “save the *** (boobies, tatas, etc)” campaigns, all in the name of breast cancer awareness. Awareness is important – increased awareness is one reason that many women no longer feel embarrassed about going to a physician when they feel a lump in their breast. Not everyone is aware – there are still women and men diagnosed at later stages, especially in minority and underserved populations. But awareness and early detection do not equal cure. Awareness is not enough. Research is needed. Why do some women and men develop breast cancer? Why do some breast cancers spread? Why do some patients respond to treatment and some do not? Why do 40,000 women in the US alone still die due to metastatic breast cancer? We do not have prevention, and we do not have a cure.

Money is needed to fund worthy research projects, initiatives aimed at improving access to care as well as support programs. However, pink merchandise is not necessarily the answer – we can’t shop our way out of breast cancer. It is important in October and all year to “think before you pink“. The term “pink washing” has been applied to the practice of some organizations using pink for the sole purpose of raising their own brand awareness. A tag noting “in support of breast cancer awareness” sometimes means just that – no dollars donated, just “awareness”. Some of the marketing campaigns even promote products that may actually increase breast cancer risk, such as alcohol .

Directly donating to organizations that perform or fund cancer research is one way to help. Patients with breast cancer also need support services. There are many organizations ranging from large national ones to local community nonprofits that provide a variety of free services such as transportation, counseling, financial aid to cover insurance gaps, and even childcare. Before you donate to a nonprofit organization, first confirm that they are legitimate – Charity Navigator, GuideStar, or a similar site can help. In addition, do some basic research – make sure that the organization’s mission is aligned with your preferences. Do you want to help fund education or awareness campaigns, support services, research on metastatic disease, or research on prevention? A quick review of an organization’s mission statement can ensure that you are donating to a cause that you support.

So this fall, think twice about buying those pink breath mints. If you want to make a purchase to honor a loved one, make sure you know whether or not any money will be donated for breast cancer research, education, or support. If you are donating to an organization, make sure that organization is funding programs that you support.

Also realize that you also don’t need to spend a lot of (or any) money to make a difference. Nonprofit organizations and cancer centers are usually happy to have volunteers. If you want to make it more personal, offer to cook meals, do a few loads of laundry or clean the house for someone you know who is being treated for breast cancer. Provide transportation (and company) for appointments. Offer to take someone’s kids for the afternoon so the patient can get some rest. The possibilities are endless.

This October, you can make a difference, and it doesn’t have to involve purchasing a pink kitchen appliance.

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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.

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In October, we solicited input a research survey designed to identify how patients prefer to be notified of a new cancer diagnosis and cancer-related test results. The results were presented at the 2016 Annual Meeting of the American Society of Breast Surgeons in April. The full manuscript – What Do Patients Prefer? Understanding Patient Preferences for Receiving a New Breast Cancer Diagnosis – was just published in the Annals of Surgical Oncology.

Our study showed that physicians are not meeting patient expectations regarding mode of diagnosis disclosure (phone versus in person) or timeliness of results disclosure. The majority of patients who responded to our survey preferred to be notified in person, however many commented that they truly preferred the method that was fastest. More patients preferred to be notified of radiology results by telephone, and electronic methods such as email or patient portal were preferred for blood test results.

We included many of your comments in the manuscript, and it is clear that one size most definitely does not fit all in terms of results disclosure. However, from our study it is very clear that we are not meeting patient expectations. System issues should be evaluated to identify areas of improvement in terms of timeliness of results disclosure, and physicians should ask patients how they prefer to be notified, and should make every effort to honor patient preferences.

Thank you to the community for your participation in this study, and for helping to make an important contribution to the literature. This study would not have happened without the support of the #BCSM community, as well as the Dr. Susan Love Research Foundation, Living Beyond Breast Cancer, and the Seattle Cancer Care Alliance. If anyone is interested in receiving the manuscript (and you are not able to download it from the Springer website) please email me: [contact at drattai dot com] and I will be happy to send you a copy of the paper.
Deanna J. Attai MD, FACS
Regina Hampton MD, FACS
Alicia Staley BS, MBA, MS
Andrew Bogert PhD
Jeffrey Landercasper MD, FACS

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I’ve written about the “celebrity effect” before –  misinformation disseminated by public features that subsequently influences patient decision making.

A new study published in the Annals of Surgical Oncology notes that the celebrity effect extends to media coverage as well. The authors evaluated media coverage of celebrity breast cancer stories. They found that since 2004, celebrity breast cancer media reports have significantly increased, and they noted a dramatic increase in bilateral mastectomy articles between 2008-2009, along with an increase in positive tone. The surgical treatment was more likely to be mentioned when a celebrity underwent bilateral mastectomy compared to unilateral mastectomy or breast conservation. The majority of articles reporting on bilateral mastectomy did not mention genetic factors, family history, or risk.

It is important for patients to realize that just because it’s reported in the news, doesn’t mean it’s factually correct. In addition, when it comes to reporting on medical issues and treatments in celebrities, crucial facts are often missing from the conversation. The purpose of these stories is to attract attention rather than educate – a public figure undergoing a bilateral mastectomy is a dramatic story. For an individual patient, the decision to undergo a bilateral mastectomy may be a reasonable one. However it is important to be aware that that the “celebrity effect” on the part of the celebrity as well as the media may lead to an increase in misinformation and erroneous assumptions about treatment options and potential complications.

Additional Reading: Science Daily

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