#LCSM Chat Topic for 21-Nov-2013: “Resources for Learning about Lung Cancer”

The next #LCSM Chat on Twitter will occur Thursday, November 21, at 8 PM Eastern (5 PM Pacific), and be moderated by @louisianagirl91 (Laronica Conway, a lung cancer advocate) and @JFreemanDaily (Janet Freeman-Daily, a lung cancer patient).  Our focus for this chat will be “Resources for Learning about Lung Cancer.”

Whether you are patient, caregiver, family member, or friend, hearing those three little words “It’s lung cancer” often starts a mad rush to learn about this dreaded disease.  The doctor probably explained test results and told you what to expect, but the information came so fast (often while you were still in shock) and with so many new terms that you missed much of what was said.

The search for information about lung cancer symptoms, terminology, diagnostic process, treatment and supports takes us to doctor-provided pamphlets, books, patient navigators, support groups, and websites.  Some are helpful, some not so much. This chat will be about that search for information: which resources are helpful, which are not, and what additional information would be helpful but isn’t easily accessible yet.

The three questions we will discuss on November 21 are:

Q1: During and after an LC diagnosis, what information do patients and their families want or need most?

Q2: Where do patients and their families seek information about lung cancer — online and elsewhere?

Q3: What additional information about lung cancer would you like to see online and elsewhere?

If you’re not sure how to participate in a tweetchat, visit our #LCSM Chat tab here.

Tweets for #LCAM2013 Week 2 — Personal Stories

For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Our tweets for the second week of Lung Cancer Awareness Month (#LCAM2013) focus on the personal stories of those who have lung cancer.  For Week 1 tweets, click here.  Facts for all weeks of #LCAM2013 are collected here.


November 11 Tweet
Faces of #Lungcancer: NFL player Chris Draft remembers wife and LC patient Lakeasha http://www.catchitintime.org/story/chris-draft #LCAM2013 #LCSM

November 12 Tweet
Faces of #Lungcancer: Emily Bennett Taylor, college athlete, diagnosed with LC at 28 http://embenkickscancer.wordpress.com/ #LCAM2013 #LCSM

November 13 Tweet
Faces of #Lungcancer: 7 Canadians Share Their Stories http://www.huffingtonpost.ca/2013/11/05/lung-cancer-awareness-_n_4213854.html?utm_hp_ref=tw #LCAM2013 #LCSM

November 14 Tweet
Faces of #Lungcancer: Janet Freeman-Daily “Why I’m in a Clinical Trial.” http://grayconnections.wordpress.com/2013/11/03/why-im-in-a-clinical-trial/ #LCAM2013 #LCSM

November 15 Tweet
Faces of #Lungcancer: 1000 faces, 1000 unique stories http://www.lungcanceralliance.org/get-involved/help-raise-awareness/faces-of-lung-cancer/ #LCAM2013 #LCSM

November 16 Tweet
Faces of #Lungcancer: Tonya Sears lost 4 family members to LC — now she’s an advocate http://phillytrib.com/healtharticles/item/11442-personal-connection-fuels-advocacy-for-lung-cancer.html #LCAM2013 #LCSM

November 17 Tweet
Faces of #Lungcancer: The Bonnie J. Addario Story http://www.lungcancerfoundation.org/2012/06/the-right-woman-for-the-job-the-bonnie-j-addario-story/ #LCAM2013 #LCSM

November 7 #LCSM Chat Preview

This Thursday, November 7th at 8 PM Eastern, 5 PM Pacific, we’ll gather in the Twitterverse for another one hour #LCSM (lung cancer social media) tweet chat.

This time, the topic will be on biopsies and tissue collection. Now that we’ve entered a new era where more and more of our treatments are guided by molecular markers and patient selection based on subgroups, we need more biopsy material more often. The world has changed faster than our standard practices.

1)   Barriers to tissue collection:

  • Do patients understand the need for biopsy material & what it entails?
  • Are patients reluctant to undergo invasive procedures or eager to do what is needed to identify the best molecular target?
  • Are doctors holding back on recommending sufficient biopsies that obtain enough tissue?
  • Are costs an issue?

2)   Using results that precede strong evidence:

  • Should molecular testing be standard if there isn’t a proven result with established benefit?
  • Should results from these findings be used only to do research or to guide commercially-based treatments?
  • Is the potential enough to consider broad molecular testing standard enough to be routinely paid for?

3)   Awareness & education about molecular testing:

  •  How can we best raise awareness & change practice?
  • Should we rely on doctors to be educated by professional societies?
  • Do we need more education for patients about the importance of biopsies, and if so, how do we best convey that information?
%d bloggers like this: