#LCSM Chat Topic Thu 10/20 (8pm ET): Social media and doctors–should we go there?

by Brendon Stiles, MD

doctors-and-social-mediaI (@BrendonStilesMD) am pleased to be moderating the October 20, 2016 #LCSM Chat (8pm Eastern, 5pm Pacific).   The topic of the chat will be “Social media and doctors:  should we go there?”

I am giving a talk on a similar topic in April of 2017 at the Annual Meeting of the American Association for Thoracic Surgery (AATS).  I am proud of the fact that thoracic surgery’s most prestigious academic association has recognized the importance of doctor-patient interactions on social media. In preparation for that timely talk, I would love to get input (from patients, caregivers, advocates, physicians, and from anyone interested in cancer) on cancer communication within the realm of social media. I hope to convey to my colleagues the potential that social media platforms such as Twitter have for breaking down long standing barriers to information dissemination and to shared decision making.  Along with that task, I hope to assure my medical peers that they can engage in social media without a loss of privacy or of professionalism and to instruct them how best to do so.  With those goals in mind, I plan to discuss the following topics:

  • T1:  What are the benefits to cancer physicians of participating in social media?
  • T2:  What do patients, caregivers, advocates expect from cancer physicians on social media?
  • T3:  Have you ever felt that physicans or patients have crossed boundaries on social media?  If yes, how so?
  • T4:  How can physicians best share personal information, stories, and opinions yet still be “professional”?

I am relying on this #LCSM Chat to serve as the base of my talk in April.  I hope you will join us for this important topic, which I hope to use to drive increased physician participation in #LCSM and other topics. Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.


#LCSM Chat Topic 10/6: Cancer Cure vs. Chronic Disease: How Critical is the Difference?


Our topic for the next #LCSM Tweet Chat on Thursday, October 6, at 5 PM Pacific (8 PM Eastern) is “Cancer Cure vs. Chronic Disease: How Critical is the Difference?” The moderator for this chat is Dr. Jack West (@JackWestMD).

Curing cancer is among the most valued goals in the world, both on an individual and a more global basis, and it is really at the pinnacle of the “cancer moonshot” effort. But as we try to translate these goals into practice, and as I talk with my patients in the clinic, it’s clear that “cure” means different things to different people.  For this week’s #LCSM chat, we’ll explore the different ways to think about the best outcomes we might achieve, and what we would be willing to do to achieve them.

To most people, the idea of a complete cure implies not only that the disease won’t limit survival or cause significant symptoms, but that we see no trace of it, often focusing on a rather arbitrary time line of 5 years. However, some slower processes may recur many years later.  Is there a specific time you focus on as the definitive time that you consider as the target milestone?

Many patients diagnosed with a cancer that can be treated with surgery vs. an alternative way to manage it are highly motivated to “just get it out”, explaining that they have a certain level of sleep-depriving anxiety from knowing that their body harbors a cancer. That’s understandable, but as we develop treatments like targeted therapies and immunotherapy that can suppress and control a cancer for a long period, it raises the question of how much worse it really is to have a cancer that may be present, monitored and neutralized, for long enough to cause significant symptoms or shorten survival.

Our lab tests and our scans make it increasingly possible to detect tiny amounts of cancer, perhaps a nodule that measures 1-2 millimeters or a small amount of a cancerous gene’s DNA or a protein by-product of the cancer in the blood.  Minimally invasive surgery or focused radiation make it possible to treat findings on scans that may have no symptoms and may not change survival – how valuable is it to have no evidence of disease in this situation?  Similarly, we sometimes identify cancers that are so minimal and/or slow-growing that we rightly wonder whether the treatment may be worse than the disease, especially when it may progress over decades rather than months or years.

With these developments in mind, we will explore the following timely questions:

T1) What is your definition of a cure? How much more valuable is that than long-term control of suppressed cancer & same survival?

T2) Is there a specific milestone you focus on as defining point for cure & feel you wouldn’t worry about recurrence beyond that time?

T3) What is greatest appeal of seeing no evidence of disease (NED)? Less anxiety/fear of progression? No need for further therapy?

T4) Could you accept monitoring minimal disease by lab test or scans if it had a greater than 98% chance of not limiting survival & never causing symptoms?

These are questions for which we have no consensus, whether from patients, caregivers, physicians, or other health care providers. This means that everyone’s personal insight is extremely helpful, so please join moderator me at 8 PM Eastern, 5 PM Pacific on Thursday, 10/6 for what will be a thought-provoking, lively discussion. If you’re new to #LCSM Chat, please see this handy primer on participation.

#LCSM Chat Topic 9/22: Let’s Talk #LCAM 2016

Lung Cancer Awareness Month 2016 (#LCAM) is just around the corner in November.  Our #LCSM Tweet chat on Thursday, September 22, 2016, at 8 PM Eastern (5 PM Pacific) will be a discussion of #LCAM ideas and activities.


New this year will be a joint #LCAM public awareness campaign and a website (LCAM.org) created by a consortium of non-profit lung cancer patient advocacy organizations, individuals, and the International Association for the Study of Lung Cancer (IASLC).  The logo at the top of this post is the LCAM logo created by this collaboration. A critical part of this campaign is to share and widely promote the stories of lung cancer survivors, caregivers and families of those who have been diagnosed with lung cancer. Through these stories, we will demonstrate the impact that research is having to create hope and more survivors.  We ask all of the lung cancer community to participate to raise awareness and make an impact this November.

Please complete the form at https://karmanos.qualtrics.com/SE/?SID=SV_79WfZmv5gbowZRb  to participate and share your story and photos. If you have video to share, or content that is larger than the maximum file size of 16 MB, please email us at communications@iaslc.org.  If you are an organization partner participating in the LCAM Campaign, please also use this link to submit your organization description, logo and landing page.

During the 9/22 chat, we’d like to know your thoughts about this unified #LCAM campaign: how do we best harmonize strategies, publicize the lcam.org website, and spread the word?    To guide our discussion, our moderator Deana Hendrickson (@LungCancerFaces) will raise the following topics:

  • T1: When should the consortium publicize the LCAM.org joint initiative (one date in November, one day each week in November, or …)?
  • T2: How might we harmonize #LCAM strategies among lung cancer advocacy organizations and individuals?
  • T3: How can we best spread the word about #LCAM & LCAM.org? Buy ads (where & when)? Social media (volume, content, timing of posts)?
  • T4: What LCAM logo merchandise would the #LCSM community like to see for Lung Cancer Awareness Month? (Tshirts, stretchy bracelets, pins, something else?)
  • T5: How can the #LCSM community best support #LCAM and LCAM.org?

If you’re unsure how to join a tweet chat, you can read this primer on how to participate. Hope you’ll join #LCSM Chat, Thursday, September 22, at 5 PM Pacific (8 PM Eastern). Spread the word!

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