San Antonio Breast Cancer Symposium 2013

This week I was happy to be able to attend my first-ever San Antonio Breast Cancer Symposium, which is probably the largest and most successful scientific conference devoted exclusively to breast cancer research and treatment. The meeting was exciting, intellectually stimulating, and full of great insights into both the basic and translational aspects of the disease and practical management. While I won't give in to hyperbole and say that there were "practice-changing" findings around every corner (a phrase I did hear a few times while there), a number of important research studies were discussed that I know will influence the care I give to breast cancer patients as soon as I return to my practice tomorrow.

As expected, the backchannel of the Twitter stream (using the #SABCS13 hashtag) was very active, despite some annoying WiFi woes in the convention center, with over 5700 tweets and 16+ million impressions. Thanks to the folks at symplur.com, full analytics and a transcript of the tweets can be downloaded here. If you weren't following along live during the meeting, reading the Twitter stream can provide some interesting glimpses into the science that was presented and immediate reactions and commentary.

There was plenty of media coverage from mainstream news sources, as well as specialty media like MedPageToday and the ASCO Post. Don't miss the press releases from the Symposium web site or these helpful audio interviews with some of the speakers.

And finally, I am grateful to Dr. Deanna Attai, breast surgeon and #BCSM Tweetchat co-moderator, for asking Dr. Julie Gralow and me to write blog posts for the BCSM Community site about some of the research findings presented. Rather than wasting electrons by duplicating my post here, I am linking to it here on the BCSM Community blog page. Dr. Gralow's post can be found here. Feel free to comment below on my post or anything else you wanted to share about the Symposium and findings.

USA Today article on #bcsm weekly tweetchat

Kudos and thanks to Liz Szabo (@LizSzabo on Twitter) from USA Today for her 10/23/12 article "Breast cancer survivor group is a social movement" about the weekly breast cancer social media (hashtag #bcsm on Twitter) tweetchat and online support group.  Co-founded by two breast cancer survivors/bloggers Jody Schoger (@jodyms) and Alicia Staley (@stales) a little over a year ago, the group has blossomed into a vibrant community of support for breast cancer patients and their families, caregivers, friends, and many other interested folks. If you're unfamiliar with the lingo, a tweetchat is a virtual meet-up on Twitter at a specified time, often repeated weekly or at some other interval, around a predetermined hashtag, which is a type of metadata. The conversation is often organized around questions or topics posted by the moderator, although tweetchats are by definition unstructured and free-flowing. Here's a more detailed explanation. 

The USA Today story emphasizes the power of the community that has arisen out of this online gathering. While it seems improbable that meaningful interaction could really occur over the exchange of 140-character tweets, that is exactly what happens, and the online conversation is deeply-nuanced and powerful. I have been honored to be a guest expert on #bcsm, and I frequently join in the conversation, which occurs most Monday evenings at 9:00 pm Eastern time.

I appreciate Liz Szabo allowing me to be quoted for the article and more importantly for publicizing the existence of the group and the good that it is doing. This is another example of how social media provide opportunities for connection and community that transcends geographical, institutional, and socioeconomic boundaries.

Breast cancer links page

This blog post will be a work in progress, and I'll probably keep updating it. I was motivated to do this to try to put together a list of online references for my own breast cancer patients. I do regret I haven't really done this in quite a few years. I frequently refer patients to the Hopkins Breast Center web site or Cancer.Net, but obviously there are many other choices. I will generally only list institutional, non-profit, or governmental sites, and usually only those with which I am reasonably familiar. While there is much good content on commercial sites and social media sites, it is not my intent to focus on those here.

Curation of online content - in my humble opinion - is an important role for the 21st century physician. In a perfect world, I would spend part of every visit, or at least every new patient visit, pointing my patients to online references that complement what we covered during the visit and help them further understand their diagnosis, prognosis, and treatment options. The truth is, it is very challenging to find the time to do that. That is not likely to change until we have our EHR fully implemented at Hopkins next spring, with the patient portal in place and automated after-visit summary generated with each visit. I am optimistic that the technology will facilitate this type of educational offering.

I welcome recommendations of other web sites that my readers have found helpful. As mentioned, I intend to focus largely on reputable institutional sites, but I will read every suggestion. Please leave me a comment below or suggest a site to me on Twitter (@rsm2800).

And now the obligatory disclaimer stuff...

The links that I list below are from organizations that are reputable and have a history of producing high quality , credible patient-education information. If I approve a blog comment mentioning other sites/resources, I am sharing it but not necessarily endorsing it. Obviously, all of these sites are from third parties, and I do not control their content. And as I say in the disclaimer on my home page, this blog is not medical advice. Always consult your physician for specific medical questions about your condition.

General Breast Cancer Information

Cancer.Net - Cancer Types>>Breast Cancer

NCCN Guidelines for Patients - Breast Cancer

National Cancer Institute - Breast Cancer Home Page

American Cancer Society - Breast Cancer Overview

Johns Hopkins Kimmel Cancer Center - Breast Cancer Program Home Page

Drug Information

Drug Index - British Columbia Cancer Agency

American Cancer Society - Guide to Cancer Drugs

National Cancer Institute - Cancer Drug Information

WebMD - Drug and Medication List

Clinical Trials

National Cancer Institute - Clinical Trials Search

ClinicalTrials.gov

American Cancer Society Clinical Trials Matching Service

Johns Hopkins Kimmel Cancer Center Breast Cancer Program - Clinical Trials Page

Breast Cancer/General Oncology News

Breastcancer.org Research News

MedPage Today - Oncology/Hematology Information Center

Oncolink - Cancer News

Coping/Supportive Care

National Cancer Institute - Coping with Cancer: Supportive and Palliative Care

Cancer.Net - Coping

Cancercare.org - For Patients and Survivors

Oncolink - Cancer Support and Coping with Cancer

Survivorship

Cancer.Net - Survivorship Page

LIVESTRONG - Cancer Transitions

Johns Hopkins Kimmel Cancer Center - Breast Cancer Survivorship Care

Survivorship Care Plans (JOP podcast - August 2012)

I host and edit the Journal of Oncology Practice podcast for ASCO, and this month I interviewed Deborah Mayer, who is an advanced practice oncology nurse and clinical researcher at UNC, on the topic of survivorship care plans. Deb's current interests include eHealth and cancer survivorship, and you can read her bio on the UNC website. The podcast is available on the JOP site or it can be downloaded from the iTunes Store here.

The article that we covered in the interview was in the July 2012 issue of JOP and was entitled "Patient and Provider Preferences for Survivorship Care Plans." In the article, the researchers, who were from Duke and UNC, describe how they did focus groups with cancer survivors to elicit their preferences for survivorship care plans, including format and mode of delivery. They also interviewed five primary care physicians to get their perspectives.

You can read the article for a full description of what they found in regards to patient preferences for the different survivorship care plan templates, but in the podcast interview, what I thought was even more interesting and was not covered in as much detail in the article, was what the focus group of cancer survivors had to say about their overall experiences of the diagnosis, treatment, and follow-up phases of their cancer, particularly communication issues. For example, the survivor group pretty consistently said that while the idea of a written survivorship care plan was very nice, it was really too little, too late. What they wanted was not so much to be presented a summary document at the end of therapy, but rather each wanted his or her oncologist to write down all of the details at the beginning of therapy, including drug names and key pathology points. Along those lines, ASCO as been promoting the idea of a chemotherapy treatment plan as a companion to the treatment summary document, although in reality the penetration of both documents is pretty low in most practices. In addition, once treatment ended, the patients were very interested in knowing which symptoms they needed to report to their doctors and which they could ignore. They were interested not so much in the actual percentage risk of recurrence, but rather if they were having a symptom, when should they worry and, even more commonly, whom should they call - med onc, rad onc, surgeon, PCP, etc. I thought this was a particularly good point, one that many oncologists overlook - i.e., how bewildering it can be for many patients as to which doctor to call for which problem. I've always assumed patients knew they should call me for most symptoms, especially when they are in the middle of chemo, but this is not always straightforward from the patient's perspective.

Another key point that was brought out in these focus groups was how patients were keenly aware whenever the different members of their care team weren't communicating with each other. Too often, it seemed up to the patient him- or herself to update the PCP about the status of their cancer treatments, something that most patients weren't too happy about. In the interview, Deb makes a great point about how oncologists should be even more proactive at the start of treatment in including the PCP in the medical decision-making and explicitly dividing up the different treatment and follow-up tasks between oncologist and PCP. This is particularly true in the surveillance phase, and it should be crystal clear which doctor is going to be ordering the follow-up CEA's for example. But I know from my own experience this is much trickier to operationalize than it sounds. When the oncologist and PCP are not on the same EHR, it can be a real nightmare to exchange information and meaningfully coordinate care like that. Not an excuse, just a reality check. Even on the same EHR, it's not always at all clear cut who is going to do what, meaning that the patient is the one who gets caught in the middle if doctors don't talk to each other.

The interviews with the five PCP's were also interesting. The PCP's liked the idea of treatment summaries, but they asked that they be shorter and more to the point. They wanted the Reader's Digest version, and the amount of detail that is in some survivorship care plan documents, while it may be ideal for the patient, is irrelevant to many physicians. They also asked that these summary care plan documents not contain the usual inscrutable treatment abbreviations or onco-speak gobbledygook. I suppose they tire of getting notes from us saying that the patient received AC x 4 then T x 12, with concurrent Herceptin, followed by PMRT and an AI. While that sentence makes perfect sense to me, I totally understand how it may not do much for care coordination.

Deb was a great person to interview, and the points she brought out were instructive. For me, I realize that even now practicing at Hopkins with a dedicated breast cancer survivorship program, I still can do a much better job in getting patients the information they need in a format they can really use and engage. Once again, the key word is communication. Doctors need to be better at communicating with patients about treatment specifics, long term side effects that affect quality of life, and key issues in the post-treatment survivorship phase. For the minority of us filling out survivorship care plans or any type of treatment summary document, we should stop patting ourselves on the back that we've actually done it in the first place and try to improve the ongoing communication our patients really need from us.

Hope you enjoy the article. Since you have to be a JOP subscriber to read the full text (or wait 4 months and it will be freely available on Pubmed Central), listen to our podcast to get a real flavor of this specific research study and some of the larger issues facing our patients in this transition phase.

Lessons in empathy

I follow a number of breast cancer survivors and patient advocates on Twitter (see the #bcsm hashtag), which leads me to some interesting blogs that I probably would not have otherwise discovered. One is written by Chemobabe who per her biography is a social scientist and survivor of Stage III, HER2 positive breast cancer. Her most recent post Schooling the Resident is about her experiences at a 3-year follow up visit. Thankfully, she's NED, but she recounts her impatience with the resident who was interviewing her before her regular oncologist entered the room. What was particularly annoying for her was the fact that the resident starting fiddling with his iPhone while the attending was talking to her, which led her to wonder if he was texting his friends or even taking pictures of her. She used the experience to remind her regular oncologist to mentor this resident and try to remind him to be more empathetic. In one of the comments, one person went so far as to say that the resident should be formally reprimanded with a letter in his file.

I had several reactions to the post. I went into Defensive Doctor mode first, thinking of ways to defend the hapless resident.

C'mon, it's hard to imagine he was using the phone to take pictures of you he was tweeting somewhere.

Be realistic. I can't imagine he was texting his friends. Maybe he had to answer a page, or look something up to help another patient.

Or maybe he was using his phone to research something about YOUR condition.

It's 2012 for God's sake, we all have pay way too much attention to our digital devices when we shouldn't be. It's not a cause for reprimand.

And don't be so hard on the guy when he was talking about how your arm pain might have been caused by neuropathy or lymphedema. Yes, that's obvious to you and your regular oncologist, but the resident has never met you before, and maybe he is just trying to be certain you do have an understanding of your diagnosis. It's very hard to assess a patient's understanding by reading another physician's documentation in the chart.

But on further reflection, this is wrong, wrong, wrong. I think Chemobabe really nails it here. The visit IS about her, and even if at the point the regular oncologist was taking charge of the interview from the resident, the guy should not be focusing on his phone, at least not longer than a second or two to see if it's a page that requires immediate attention (and by saying "excuse me" or something). It's just rude, and it misses the point of why he is in the room in the first place. And maybe he could have saved himself some grief by spending the first minute or two trying to develop rapport with the patient and asking her what she knows about her symptoms, and more importantly, what he can do to help her that day.

I haven't at all forgotten what it's like to be a trainee, even though it's been 20 years for me. It is intimidating when you are in a patient encounter where your fund of knowledge is minimal, your experience is nil, and everyone knows that. But the biggest regret of my days of residency and fellowship is not that I didn't know the answer to the attending's question or I made a mistake that someone else had to fix. It's that I missed too many opportunities to be empathetic and listen, right at the moment that the patient across from me needed it the most.