#LCSM Chat topic 11/3: #LCAM—Pick Your Passion
It’s November, and that means LUNG CANCER AWARENESS MONTH is here! The registered Twitter hashtag for Lung Cancer Awareness Month this year (and hopefully all future years) is #LCAM.
If you want to get involved in spreading awareness and generating support for lung cancer patients, caregivers, and research, you’re in luck. Our #LCSM Chat on November 3, 2016, at 8 pm ET (5 pm Pacific) will discuss how YOU can get involved in LCAM.
In addition to the LCAM materials and resources available from lung cancer advocacy organizations (see list at the end of this post), we will be highlighting a new collaborative #LCAM effort. The website lcam.org was created specifically for LCAM by the International Association for the Study of Lung Cancer (IASLC), in partnership with several lung cancer advocacy groups. The logo at the top of this blog post is the LCAM logo created for LCAM.org. The site is unbranded and aims to offer hope to those affected by lung cancer. This year the site focuses on patient stories with supporting factoids, a calendar of LCAM events (starting with the Nov 1 LCAM Press Conference in Washington, DC), and options for purchasing LCAM logo merchandise (the proceeds of which support lung cancer research).
Patients and caregivers can contribute to LCAM in a number of ways:
- Watch Facebook, Twitter and media for posts about lung cancer, and share them on social media
- Share your lung cancer story on lcam.org and other sites (see below)
- Attend lung cancer events
- Look for ways to expand your advocacy
- Donate to lung cancer organizations that do work important to you
Our stories have a greater impact when they have a clear message. The majority of this chat will focus on hints for telling your lung cancer story in a way that attracts readers and media attention. To guide our exploration of lung cancer storytelling, we will have two special guests:
- Mark Story (@markstory_) is a strategic communications executive and cancer communicator with more than 20 years of experience. His mother died of lung cancer. While his day job is at the NCI, he is in no way representing the organization nor its views in this chat.
- Jennifer Stauss (@jenniferjstauss) has more than 18 years in public relations, crisis communications and social media strategy. She used these skills to highlight her Mom’s journey through lung cancer through their joint politically incorrect social media campaign called “WTF? (Where’s the Funding) for Lung Cancer.”
Our guests will suggest ways to (1) tell your story to generate the greatest impact, (2) pitch your story to local and national media outlets, and (3) leverage your story in different types of advocacy.
Be aware that sharing your story means going public with health information (good overview in this thoughtful post by Marie Ennis O’Connor, AKA @JBBC). You really do need to think about privacy implications before writing.
Our moderator @JFreemanDaily (Janet Freeman-Daily) will guide our conversation using the following questions:
- T1: What materials and resources are available for #LCAM advocates?
- T2: What are some tips for sharing my #lungcancer story effectively for #LCAM?
- T3: How can I get media interested in #lungcancer stories?
- T4: How might I share my #lungcancer story in other forms of #lungcancer advocacy?
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. A link to the chat transcript and a Storify summary will be available within a few days on our Schedules and Transcripts page.
We look forward to chatting with you about #LCAM storytelling on November 3!
RESOURCES FOR LUNG CANCER AWARENESS MONTH 2016 (#LCAM)
You can find resources and information at lung cancer advocacy organization websites in this list of Lung Cancer Action Network (LungCAN) members.
The websites listed below have specific Lung Cancer Awareness Month pages.
Organization: International Association for the Study of Lung Cancer
LCAM resource: share your story on lcam.org (new collaborative LCAM website)
hashtag: #LCAM and #LCSM
Organization: American Lung Association (ALA)
LCAM resource: share your story at www.LUNGFORCE.org
hashtag: #LungForce
Organization: The Bonnie J. Addario Lung Cancer Foundation
LCAM resource: National Lung Cancer Awareness Month
hashtag: #beatlungcancer
Organization: Free to Breathe
LCAM resource: post a video
hashtag #fliptobreathe
Organization: Lung Cancer Alliance
LCAM resource: Five easy ways to make a difference
hashtag: #ShareHope
Organization: Lung Cancer Foundation of America (LCFA)
LCAM resource: “Little Things” videos
hashtag: #littlethingsLCFA
Organization: Lung Cancer Initiative of North Carolina
LCAM resource: attend an event
hashtag: #LCAM
Organization: Lung Cancer Social Media
LCAM resource: tweetable LC facts
hashtag: #LCAM and #LCSM
Organization: LUNGevity Foundation
LCAM resource: share your story on social media
hashtag: #changelc
#LCSM Chat Topic Thu 10/20 (8pm ET): Social media and doctors–should we go there?
by Brendon Stiles, MD
I (@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 
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