Social Media Use and Breast Cancer Treatment Decisions

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.

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What Do Patients Prefer?

21 June 2016

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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Media Reporting on Celebrity Breast Cancer

20 April 2016

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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If It Sounds Too Good To Be True…

29 October 2015

We’ve all seen the headlines noting a “blockbuster” or “groundbreaking” new drug for cancer treatment. It can be very difficult to sort out whether or not the hype is indicated. A study published in JAMA Oncology evaluated how news articles described new cancer medications. They evaluated the use of the superlative terms “breakthrough”, “game changer”, “miracle”, “cure”, “home run”, “revolutionary”, “transformative”, “life saver”, “groundbreaking”, and “marvel” in conjunction with “cancer drug”.

Screen Shot 2015-12-06 at 2.54.20 PM

What they found was disturbing. 50% of the drugs described using the terms above were not FDA-approved. 14% had never been tested in humans – the research was performed in animal models and cell cultures. In the majority of cases, the superlative was used by the news article author, without attributing it to a physician or researcher. The study authors concluded that those using the terms may not necessarily have the expertise to properly evaluate research studies involving cancer medications.

What should the average patient do? It’s hard to ignore these stories – we are all on the alert for anything that could be considered a breakthrough in terms of cancer care. A good guide for reviewing news articles is posted at the nonprofit site Health News Review. Their 10-step process evaluates various components of the article, and allows even those with limited medical knowledge to critically review news articles. If it sounds too good to be true, it probably is.

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#ILookLikeASurgeon

14 August 2015

It was hard not to get swept up in this one. Anyone who has frequented You Tube knows that certain posts go “viral”. Everyone gets caught up, there is a period of intense conversation and attention, and then it’s gone, replaced by the next trend. While I’ve been amused by some of these “current events”, I’ve never been an active participant. Until now.

A few months ago, This is What We Look Like launched. The purpose:  “Promoting the presence, awareness, and progress of women in traditionally male dominated fields – Filling the web with images of women doing what is usually considered men’s work”. Images of women wearing t-shirts with slogans such as “This is What a [Drummer/CEO/Philosopher/Surgeon] Looks Like” began to fill the internet.

On August 5th 2015, the New York Times reported on the on-line campaign #ILookLikeAnEngineer. Fast forward a few hours, when General Surgery resident Dr. Heather Logghe posted the following on twitter:

A few tweets of support followed:

Next thing you know, the internet was flooded with surgeons posting pictures of themselves, tagged with #ILookLikeASurgeon. All taking part in the celebration of surgical diversity. A Facebook page was started by surgeon Dr. Kathy Hughes.

The images are inspiring. Women from all over the world have participated. Men have joined in, “celebrating the diversity of surgeons and surgery itself”. Breast cancer patient and advocate Terri Coutee wrote about how the images humanize the profession. Even the TODAY Show took notice.

I jumped on board with 3 tweets:

and my favorite:

It is unfortunate that campaigns like this are still necessary. During many of my medical school interviews, I was asked “How can you think about becoming a doctor when you are going to have children?”. Never mind that I didn’t see children in my future even at that young age. On one of my interviews for general surgery residency, I was told by a senior surgeon that women were not generally welcome in the operating rooms at that institution – how would I handle that? I handled it by finishing that interview and skipping out on the lunch and afternoon program to catch an earlier flight home – that was clearly not a program for me.

My medical school class at Georgetown was about 40% women. However, as a general surgery intern at Georgetown in 1990, I was the only woman in the 5-year surgical residency program. There was only one female faculty member, Dr. Colette Magnant. I was one of only a few woman to finish the program as a general surgeon. However, it was a supportive program and I never felt that my gender was a barrier. Throughout my career, I have been mentored by incredible women and men. I owe the many women who came before me in medicine an enormous debt of gratitude, as I feel I’ve had a relatively easy time of things. One of my great pleasures today is working with young women including high school and college students, medical students and surgical trainees, to help show them that “it can be done”.

There are now a growing number of role models for women considering a surgical career. More and more women are filling department chair positions at academic and community institutions and are taking on leadership roles in professional organizations. I am proud to be serving as the current President of the American Society of Breast Surgeons and was happy to respond “no!” when asked if I was their first female president. I am the 19th President, and the 6th woman to hold that position. 52% of our members are women, and 56% of our leadership roles are filled by women, a point raised by Dr. Hiram Cody III during his Presidential Address in April 2015. In Dr. Cody’s words: “We are not an old boy’s club, and there is no glass ceiling at ASBrS”.

With Dr. Hiram Cody III ASBrS Annual Meeting April 2015

With Dr. Hiram Cody III ASBrS Annual Meeting April 2015

Women in surgery and other fields still face many challenges. But the #ILookLikeASurgeon campaign reminds us how many have successfully faced those challenges. My hope is that there will be no need for similar campaigns in the future.

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Twitter Social Media an Effective Tool for Breast Cancer Education and Support

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.

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Profiles in Oncology Social Media: @DrAttai

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.’”

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Breast Cancer – The Celebrity Effect

12 November 2013

Over the past year, breast cancer and mastectomy has been in the spotlight due to attention from celebrities such as Angelina Jolie and Amy Robach.

There is no question that when public figures share their stories, awareness is raised. The unfortunate part is that important facts are usually omitted from the conversation, and misinformation is spread. While anyone has the right to discuss their disease, public figures should be held to a different standard. Their information reaches millions, and their words are held as truth. Unfortunately, we rarely if ever have the complete story. Most often, an announcement is made about upcoming or recent surgery, and statements are made about “beating cancer” or “being cured”. In the absence of information about the pathology report, stage of disease and other factors, these statements do nothing to educate or inform. I would not expect anyone, including someone in the public eye, to disclose their medical records. However a simple statement such as “I am choosing this treatment with the advice of my physicians” can go a long way towards acknowledging that the treatment decisions are complex and unique to the individual.

Some important points:
– Early detection does not equal cure. Some breast cancers are so aggressive that they will go on to metastasize regardless of how early they were found. Some breast cancers will never metastasize, even if they become quite large. Tumor biology – the behavior of the individual cells – is more important than the size of the tumor at diagnosis. Statements such as “a mammogram saved my life” do not apply to every breast cancer case.

– You will not live any longer if you have your breast removed. The survival rates from breast cancer are the same whether you undergo a lumpectomy with radiation or a mastectomy. Statements such as “I had a mastectomy because I’m young and wanted to be aggressive” have no basis in reality. You can be appropriately aggressive by having a lumpectomy followed by radiation, depending on the extent of your tumor. More surgery is not better.

– Breast cancer can come back even after the breast has been removed – the risk is approximately 1-5%. After lumpectomy and radiation, the risk of cancer retuning in the breast is approximately 5-10% with modern techniques. Statements such as “I had a mastectomy so I don’t have to worry about cancer anymore” also has no basis in reality. With either surgery (lumpectomy or mastectomy), there is a risk of cancer metastasizing, or showing up somewhere else in the body. Any invasive breast cancer has the potential to shed cells from the main tumor into the bloodstream. Those malignant cells may then form tumors in other areas of the body, such as the bones, lungs, liver, and brain. The type of surgery (lumpectomy versus mastectomy) does nothing to reduce the risk of metastatic disease, and the survival rates are equal regardless of the surgery performed.

– In patients who undergo removal of the ovaries (due to the increased risk of ovarian cancer), there still is a slight risk of developing ovarian or primary peritoneal cancer, which mimics ovarian cancer in it’s growth and aggressiveness. Patients who have had breast cancer or are BRCA mutation carriers are also at increased risk for the development of cancers in addition to breast and ovarian, so lifelong surveillance is important.

– Many have the misconception that if they undergo a mastectomy, they will not require chemotherapy. Chemotherapy is given based on the tumor stage as well as tumor biology – the decision is made on the aggressiveness of the cancer. As mentioned above, a mastectomy does not prevent the cancer from spreading, so chemotherapy may still be required after mastectomy.

– Radiation therapy is utilized after lumpectomy to reduce the risk of cancer returning in the breast. While radiation is generally not needed after mastectomy, there are some cases where it is required. Similar to the decision for chemotherapy, the decision for post-mastectomy radiation depends on the stage of disease and tumor biology.

– The recovery from surgery is not always straightforward and most patients are not “back to a normal life” a few days after surgery. As with any surgery, there can be unexpected complications and additional procedures may be needed.

– Reconstructive techniques, while much improved, can never guarantee a perfectly natural or symmetric result. Reconstruction after mastectomy is a much different operation than undergoing implants for cosmetic purposes. Once the breast has been removed, it can never be replaced. The skin (and nipple if preserved) are numb, and the feel and appearance are different. Many patients are very happy with the cosmetic results of their reconstruction, but realistic expectations are needed.

– In regards to BRCA genetic testing, some women struggle tremendously with the decision even to be tested. There are implications not only for the patient but also for her relatives. In patients who test positive for a mutation, there are also difficult decisions to be made regarding surveillance versus prophylactic surgery.

There’s Another Side to the Amy Robach Breast Cancer Story is an excellent post by Gary Schwitzer of the HealthNewsReview on the subject.

 

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Breast Cancer Diagnosis and Treatment, BRCA Testing, PinkWashing, and More!

16 October 2013

This is one of my most comprehensive interviews to date. It aired on Santa Clarita Valley TV and I had the opportunity to discuss a wide range of topics, including breast self-exams, male breast cancer, genetic testing for breast cancer, “pink washing” and more! Many thanks to SCVTV as well as Tami Edwards and Dave Caldwell, for spending so much time on such important topics.

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Creating Patient-Physician Synergy with Social Media

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

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