#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?

Tweet for #LCAM2013 (Lung Cancer Awareness Month)

The October 24th #LCSM Chat on “Social Media and Lung Cancer Advocacy: What Can I Do?” identified lots of information that the public needs to know about lung cancer.  Chat members decided we’d like to tweet those facts during Lung Cancer Awareness Month (#LCAM2013) this November. Some suggested we all tweet the same fact each day to generate the greatest impact on Twitter.

To coordinate this effort, the #LCSM team compiled a list of lung cancer tweets based on verified facts – one tweet for each day in November. Links to the sources for the facts are listed below the tweets for those who want evidence.

@LCSMChat will tweet each day at 11:55 AM Eastern Time if you prefer to retweet rather than come here to find the tweets.

The tweets fall into four groups, roughly by weeks:

Week 1:  WHY — reasons why curing lung cancer matters
Week 2:  WHO — personal stories of lung cancer patients
Week 3:  HOPE — symptoms, early detection, personalized treatment, research
Week 4:  HELP — what you can do (how to fund research, advocate, support patients, etc.)

Trending: We’ve included #LCAM2103 and #LCSM in every tweet to help with trending. If we all tweet/retweet the fact of the day at the same time, we might achieve it!  Please try to tweet/retweet each daily fact as close as possible to 12 noon Eastern Time (New York City time for those of you outside of North America). Hint: The tweetdeck app will allow you to send tweets at a scheduled time.

Week 1 tweets are listed below.  Tweets for Weeks 2-4 will be blogged later in the month. If you subscribe to the #LCSM Chat blog, you will receive an email when our blog posts are published. All the facts will also be available on a “Lung Cancer Facts” page of this site for easy reference.

WEEK 1: WHY – REASONS WHY CURING LUNG CANCER MATTERS

November 1 Tweet
Myth: Don’t smoke? Can’t get lung cancer. Fact: Lung cancer in never smokers is 6th leading cause of US cancer deaths. #LCSM #LCAM2013

Johns Hopkins Medicine. Guide on Lung Cancer in Never-Smokers – Different Disease Different Treatments (09/15/2009). Retrieved Oct 30, 2013, from http://www.hopkinsmedicine.org/news/media/releases/Guide_on_Lung_Cancer_in_NeverSmokers__Different_Disease_Different_Treatments.

November 2 Tweet
Lung cancer kills almost 2x as many women as breast cancer & 3x as many men as prostate cancer. #LCSM #LCAM2013

U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2010 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2013. Retrieved from http://apps.nccd.cdc.gov/uscs/toptencancers.aspx.
To access data, select year 2010, “death rates” tab and view table for all ethnic groups Per CDC, 2010 cancer deaths were caused 37.9% by lung cancer and 21.9% by breast cancer in women, 60.1% by lung cancer and 21.8% by prostate cancer in men.

November 3 Tweet
160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers. #LCSM #LCAM2013

SEER Cancer Statistics Factsheets: Lung and Bronchus Cancer. National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/statfacts/html/lungb.html
In
the United States in 2013, it is estimated there will be about 159,480 deaths from lung cancer.
Approximately 6.9 percent of men and women will be diagnosed with lung and bronchus cancer at some point during their lifetime.

Centers for Disease Control and Prevention. MMWR Weekly 56(44);1157-1161. (9-Nov-2007). Retrieved Oct 30, 2013, from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5644a2.htm.
Lung cancer cases are 17.9% never smokers, 61.2% former smokers, 20.9% smokers (see Table 2, lung neoplasms).

November 4 Tweet
The 5-year survival rate for lung cancer is 16%, about the same as it’s been for 40 years. #LCSM #LCAM2013

SEER Cancer Statistics Factsheets: Lung and Bronchus Cancer. National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/statfacts/html/lungb.html
Current
5-year survival rate of adults with lung and bronchus cancers is 16%. In 1975, the 5-year survival rate for lung cancer in adults was 11.4%.

November 5 Tweet
World Health Org: Air pollution is responsible for 223K lung cancers deaths/yr worldwide – it’s worse than 2nd-hand smoke. #LCSM #LCAM2013

International Agency for Research on Cancer, World Health Organization. Press Release No 221 – IARC: Outdoor air pollution a leading environmental cause of cancer deaths. (17-Oct-2013). Accessed 20-Oct-2013 from http://www.iarc.fr/en/media-centre/iarcnews/pdf/pr221_E.pdf

November 6 Tweet
Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.  #LCSM #LCAM2013 

American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf

November 7 Tweet
81% of prostate cancer and 60% of breast cancer cases are diagnosed before they spread. Lung cancer? Only 15%. #LCSM #LCAM2013

 American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf

November 8 Tweet
US research $ per cancer death is far greater for colorectal (4x), prostate (8.5x) & breast (14x) cancers than lung cancer. #LCSM #LCAM2013

National Lung Cancer Partnership. What You Can Do (graphic). (Mar-2013). Accessed from http://www.nationallungcancerpartnership.org/images/uploads/files/NLCP_FS_1Facts_NextDayFlyer_2013_BACK.pdf.

American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf.

U.S. Army Medical Research and Materiel Command, Department of Defense. 2012 Congressionally Funded Medical Research Programs. (30-Sep-2012). Accessed from http://cdmrp.army.mil/pubs/annreports/2012annrep/2012annreport.pdf.

NIH Research Portfolio Online Reporting Tools. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). (10-Apr-2013). Accessed from http://report.nih.gov/categorical_spending.aspx.

November 9 Tweet
Lung cancer is the second leading cause of all deaths in the US. #LCSM #LCAM2013

National Lung Cancer Partnership. What You Can Do (graphic). (Mar-2013). Accessed from http://www.nationallungcancerpartnership.org/images/uploads/files/NLCP_FS_1Facts_NextDayFlyer_2013_BACK.pdf 

November 10 Tweet
Lung cancer is also linked to radon gas in homes (20,000 deaths/yr), workplace exposure, genetics, & cancer treatment. #LCSM #LCAM2013

US Environmental Protection Agency. Radon. (26-Aug-2013). Accessed from http://www.epa.gov/radon/.

World Health Organization’s Environmental and Occupational Cancers Fact Sheet http://www.who.int/mediacentre/factsheets/fs350/en/

Coté ML et. al. Eur J Cancer. (Sep-2012). Increased risk of lung cancer in individuals with a family history of the disease: a pooled analysis from the International Lung Cancer Consortium. Accessed from http://www.ncbi.nlm.nih.gov/pubmed/?term=22436981

American Cancer Society. Second Cancers Caused by Cancer Treatment. (30-Jan-2012). http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf

Recap of October 24 #LCSM Chat

By Laronica Conway

During the October 24 chat, members of the #LCSM chat community participated in an hour-long brainstorming session about combining advocacy and social media to increase lung cancer awareness.

It was a fast exchange of great ideas and it was a great opportunity to hear from those who advocate for lung cancer on a daily basis. We’ve got a long way to go but we all agreed that it will take a grassroots effort to increase awareness and change the public’s perception of lung cancer.  Hopefully, by changing the perception we can remove the stigma, increase funding for research and provide hope to lung cancer patients and their families.

Below is a quick recap of the chat. You can find the full transcript here, courtesy of Symplur.

Question 1: What are the most important messages we need to communicate to the public about lung cancer?

We discussed several key messages about lung cancer, but a clear message emerged early in the chat: everyone is at risk and anyone can get lung cancer.  We also focused on some harsh, but significantly important stats: lung cancer is the number one cancer killer and it kills more people than breast, colon and prostate cancers combined.  And it doesn’t matter if a person smoked; no one deserves to die from lung cancer.  Advocating early screening, educating about environmental risks and providing more information about symptoms are also vitally important messages we need to share with the public.

 Question 2: How can we use Facebook, Twitter and other social media to raise lung cancer awareness?

 Many of us spend a lot of time using social media sites like Facebook and Twitter to communicate with friends, read the news or keep up with the latest fashion trends. But we could also use those sites to promote awareness and educate others about lung cancer.   For some, using Facebook might be easier than Twitter or Instagram.  Or, spending time on Google+, LinkedIn or Pinterest might make more sense for others.  There are plenty of social media sites with a myriad of options in which to communicate significant messages.  Regardless of the platform chosen, all efforts to educate about lung cancer need to be unified, using a strong, collective voice.  It was also suggested that these efforts be visual, moving across all sites with the same direct messages.  Everyone agreed that one good way to gain traction for these messages would be to recruit individuals in the media, journalists or other public figures, to help us tell our stories.  These individuals should have direct access to the general public and have a stellar reputation for disclosing the truth and educating others about delicate and difficult subject matters.

 Question 3: What can we do to stir media & business interest in Lung Cancer Awareness Month?

One way to increase awareness, especially during November, is to provide education and facts about lung cancer.  Those participating in the chat agreed to compile a list of lung cancer facts and share a different fact every day in the month of November.  We would ask the lung cancer community to use these facts on their social media platform of choice, ensuring concise and accurate message dissemination.  Also, while sharing these facts we could also share more personal stories, which would put a “face” on the disease.

Many of us agreed to contact local and national media via Twitter and email (or whatever platform is easier) to share personal stories and facts and to encourage them to write articles during lung cancer awareness month. And it doesn’t just have to be national or local media; anyone with a blog or website could also help spread awareness about lung cancer.  To make people aware we have to share. Share your stories and share the facts.

Now is the time to change people’s perception of lung cancer and lung cancer patients.   We can do this if everyone does their part to share the facts and eliminate the stigma.

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