#LCSM Chat Topic 11/20 (8 PM EST): Know Your Radon Risk

What action would you take to protect your family if you suspected a killer was in your home?

Radon gas is odorless, colorless, and classified as a human carcinogen by the World Health Organization, US National Academy of Sciences, US Department of Health and Human Services, and US Environmental Protection Agency (EPA).
Approximately 21,000 Americans will die from radon-induced lung cancer this yearIndoor exposure to radon gas is the second greatest known risk factor for lung cancer.  Radon exposure is a threat significant enough that nine federal agencies worked together to release the Federal Radon Action Plan in 2013.

The topic for our November 20 #LCSM Chat (8 PM EST) will focus on understanding what radon gas is, how to determine your risk, and how to reduce your risk at home.  For this chat, we will be joined by some special guests:

Our moderator Janet Freeman-Daily (@JFreemanDaily) will lead our discussion using the topics below.  You can learn more about #LCSM Chat and how to join it here.

T1:  What is radon gas? Why should we care about it?

T2: How can people determine if radon is a concern for them?

T3: How can people reduce indoor radon gas levels in their homes and businesses?

T4: How can we help more people learn about dangers of radon gas and how to reduce their risk?

 Resources

Thanks to Dusty Donaldson of the Dusty Joy Foundation for help with researching information for this post.

#LCSM Chat tweets for Lung Cancer Awareness Month (#LCAM14)

During Lung Cancer Awareness Month this November (#LCAM14), #LCSM Chat (@lcsmchat on Twitter) will post daily tweets following the schedule below.   All times are Pacific.

6 AM:    lung cancer fact or statistic (check our list of ready-made tweets)

10 AM:  research or new treatment info (written or video)

2 PM:    inspirational survivor story (written or video)

6 PM:    #nostigma statements and/or #WhipLungCancer videos

Some of our tweets will be new, some will be tweets we’ve posted in the past, and some will highlight tweets posted by others in the lung cancer community.

Please consider sharing posts by @lcsmchat and others in the #LCSM community via tweets and other social media to help raise awareness of this deadly disease and generate support for lung cancer patients and research.

Remember:  ANYONE with lungs can get lung cancer.

Special #LCSM Chat Topic 11/05 1 PM ET: @TheNCI hosts chat on precision medicine in lung cancer

#LCSM Chat is pleased to announce a special #LCSM Chat for Lung Cancer Awareness Month will be held on WEDNESDAY, November 5 at 1 PM Eastern Time (NOT our usual day and time). The National Cancer Institute (@theNCI) and a panel of experts will be using the #LCSM hashtag to talk about exciting new lung cancer treatment options!

This chat will be in question-and-answer format, with a panel of experts addressing specific topics posed by @theNCI as well as fielding audience questions related to those topics. This format is great for patients, caregivers, medical personnel and advocates regardless of their previous experience with tweetchats.  We hope you’ll join us!  (Check out our refresher on how to join a tweetchat)

Below is NCI’s announcement about the November 5 Chat.

On Wednesday, November 5 from 1:00-2:00 ET, the National Cancer Institute (@theNCI) will be hosting a Twitter chat on precision medicine in lung cancer using the #LCSM hashtag.

We’ll have a “who’s who” of precision medicine lung cancer experts on the chat, including:

  • Dr. David Gerber, Lung Cancer Specialist, UT Southwestern Medical Center
  • Ryan M. Hohman, JD, Managing Director, Policy & Public Affairs, Friends of Cancer Research
  • Dr. Shakun Malik, Head, Thoracic Cancer Therapeutics in the Clinical Investigations Branch of the Cancer Therapy Evaluation program at the National Cancer Institute
  • Kim Norris, Founder/President, Lung Cancer Foundation of America
  • Dr. Geoffrey R. Oxnard, MS, Instructor in Medicine, Harvard Medical School
  • Dr. Vassiliki Papadimitrakopoulou, M.D., Professor, Department of Thoracic/Head and Neck Medical Oncology, at the University of Texas MD Anderson Cancer Center, Houston, TX

During the chat, the experts will be discussing, among other topics, how lung cancer treatment has changed over the last few years, provide more information about the definition of “precision medicine” as it applies to lung cancer, discuss when patients might consider a clinical trial, as well as provide more background and specifics on the Lung-MAP and ALCHEMIST clinical trials.

For more background information on Lung-MAP, we also recommend Friends of Cancer Research’s “What Leaders in the Field are Saying About Lung-MAP.”

#LCSM Chat Topic 10/23: How can we help new stage IV #lungcancer patients consider 2nd opinions, mutation testing and clinical trials?

Most patients experience a period of stunned disbelief or shock when they hear a diagnosis of “metastatic lung cancer.”  For those who are offered treatment options, the first few months revolve around medical appointments.  Others may only be told to go home and get their affairs in order.  Patients and family members may be in denial, or trying to process what all those dismal survival statistics mean for their future. It might be the first time the patient or a family member has had to confront the possibility of death for themselves or a loved one.

Some patients (or their caregivers) may be empowered, engaged and researching options, but many don’t have the physical or emotional energy to do so.  At this point, few patients are thinking about second opinions, mutation testing, or clinical trials.

The problem with waiting for metastatic lung cancer patients to become empowered and engaged is that the majority won’t live a year if they can’t access the newest treatment options. However, if they get educated about their options, consult with a knowledgeable oncologist, and are eligible for newer treatments or clinical trials, their lifespan may be years longer.

You might ask, how could this be true?

The landscape of personalized medicine and new lung cancer treatments is changing fast, and more stage IV lung cancer patients are living longer.  Unfortunately, due to the pace of that change, not all healthcare providers who treat lung cancer are current on the newest treatment options. Some oncologists do not test their patients’ adenocarcinoma lung cancer tumors for EGFR or ALK, even though NCCN and other respected guidelines recommend it.  Even research oncologists at NCCN facilities can’t track every new clinical trial for lung cancer.  And, sadly, some healthcare providers simply believe that because metastatic lung cancer is not curable, there’s no point in treating it.

The fact is, most metastatic lung cancer patients (or their trusted caregivers) will need to become engaged and empowered if the patients want a better chance at survival.  Many will need help to do this, either online or offline.

The #LCSM Chat on October 23 will explore how the lung cancer community might help metastatic lung cancer patients become interested in and knowledgeable about second opinions, mutation testing, and clinical trials. Your moderator Janet Freeman-Daily (@JFreemanDaily), a stage IV lung cancer patient who currently has No Evidence of Disease in a clinical trial, will offer the following topics for discussion:

T1:  How can we help a stage IV lung cancer patient understand the need for 2nd opinion when their doctor offers no treatment?

T2:  How can we help a stage IV adeno lung cancer patient consider EGFR & ALK mutation testing if their doctor has not done it?

T3:  How can we help a stage IV lung cancer patient consider targeted therapy clinical trials if they have a targetable mutation?

We look forward to seeing you in the chat! To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like tchat.io with that hashtag (more on that here).

#LCSM Chat Topic 10/9: Helping media to cover #LCAM14

It’s Pinktober, that time of year when lung cancer advocates feel a pang of envy for the extensive media coverage given to other cancers. November is Lung Cancer Awareness Month (#LCAM14 on Twitter), and if things remain as they have in past years, few stories about lung cancer will appear in the media.

But we—the Lung Cancer Social Media community–have a chance to change that if we act NOW.

Let’s think about what barriers might keep journalists and reporters from producing lung cancer stories in the media during November:

  1. The idea didn’t occur to them.
  2. They’re not aware of the facts (such as lung cancer is the most deadly cancer worldwide, as well as #2 killer of all types in the US).
  3. Stigma makes them reluctant to support lung cancer awareness.
  4. They don’t know any visible, interesting survivors, family members, or care providers to use as source for the story.
  5. They need a fresh angle to avoid producing a story too similar to what they or someone else has already done.
  6. They’re short on time.

In years past, lung cancer advocates have made lists of media contacts and sent emails, tweets, and Facebook posts asking them to cover lung cancer during November. However, this approach doesn’t address most of the barriers listed above.  We can do better.

Let’s take a different tack. Let’s HELP the journalists and reporters overcome these barriers. We can make media coverage more likely by either writing an article ourselves to save them time, or suggesting facts, interview sources, and story angles they can use.  We can address the specific barriers by:

  1. Suggesting a lung cancer story to a local or national media outlet via email, Facebook, or Twitter.
  2. Providing key facts AND a link to sources for more facts.
  3. Showing why stigma is based on unfair assumptions.
  4. Suggesting well-spoken local survivors, family members, or care providers they can interview.
  5. Suggesting a “hook” — an angle for the story that ties into their market (e.g, local hospital for a regional paper, or a national movement like the CMS screening decision for a national newscast).
  6. Provide other content suggestions that reduce needed writing and production time.

The #LCSM Chat on 10/9 will brainstorm how to help journalists and reporters overcome the barriers to covering lung cancer in November. Your moderator, Janet Freeman-Daily, will offer the following topics for discussion:

  1. How might you identify well-spoken lung cancer survivors/family/providers with a good story for an interviewer?
  2. What local or national media outlet could you contact: paper, magazine, radio, TV, Internet?
  3. What new story angle might you suggest for your target outlet—person, activity, cancer clinic program, clinical trial …?
  4. What links and sources can you provide for reliable lung cancer facts and info about stigma?

We look forward to seeing you in the chat! To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like tchat.io with that hashtag (more on that here).

#LCSM Chat Topic 9/25: Challenges in making LDCT screening chest scans standard of care for high risk patients

It has been a couple of years since the National Lung Screening Trial demonstrated a clear survival benefit for low dose CT (LDCT) screening of patients who have a high risk of lung cancer (with “high risk” defined as age 55-75 and a significant smoking history). While lung cancer screening is offered in programs at various centers around the US, it remains a controversial procedure that has not been approved by Medicare as a covered service. On Thursday, September 25th, 8PM ET/ 5PM PT, we’ll discuss the existing barriers in lung cancer screening in late 2014.

Oft-cited issues are screening cost and cost effectiveness. While it’s clear that most abnormal scans will ultimately prove to represent benign “false positive” findings that may require additional imaging, possibly a biopsy, and may contribute to patient anxiety, a recent actuarial analysis indicates that LDCT screening is cost effective.

But we also see that screening isn’t an entirely data driven decision. Breast cancer recommendations have been reversed based on social and political pressure when the evidence-based guidelines didn’t support screening in younger patients. Primary care physicians may be reluctant to accept lung cancer screening based on a fatalistic view of lung cancer and the American Academy of Family Physicians (AAFP) reluctance to recommend LDCT screening. And patients themselves may drag their feet despite being appropriate candidates, while other low risk patients may aggressively seek screening, based on a misunderstood perception of the real probability of benefit from chest CT screening.

#LCSM previously cohosted a #JACR (Journal of the American College of Radiology) tweetchat on June 26 about patient perspectives on lung cancer screening with LDCT.

With these considerations in mind, we’ll cover these three questions:

T1: With deadline for Medicare decision 11/10, how can the LC community convince decision-makers of benefit of screening?

T2: Assuming coverage, how can we maximize recommendations from PCPs to discuss & order CT screening for appropriate pts?

T3: What do people think of emerging efforts such as breath tests, blood tests, etc? How do they fit into efforts at LC screening?

To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like tchat.io and the #LCSM hashtag (more how-to info is here).

#LCSM Chat Topic 9/11: Planning the Social Media Campaign for Lung Cancer Awareness Month (#LCAM14)

Our September 11 #LCSM Chat on Twitter (at 8 PM ET, 5 PM PT) will be an opportunity to brainstorm, coordinate and plan social media activities for 2014 Lung Cancer Awareness Month in November. The chat will be moderated by Janet Freeman-Daily.

In November 2013, the #LCSM community promoted lung cancer awareness using the hashtag #LCAM on Twitter. Each day of the month, we tweeted a different factoid or call to action related to lung cancer. Others retweeted those facts and posted them on social media sites like Facebook. You can find a list of those tweets and links to the sources of the factoids on the Lung Cancer Facts page on this site. Over 8500 tweets included the hashtag #LCAM in November 2013– not bad, given that the first #LCSM Chat occurred less than four months earlier on July 25, 2013.

This year, we want to extend the reach of LCAM by engaging lung cancer bloggers and all social media sites as well as Twitter Twitter. We will use the hashtag #LCAM14 in all tweets related to Lung Cancer Awareness Month this year. (This hashtag has been registered with Symplur so we can track the impact our campaign is having on Twitter.)

#LCSM is networking with other lung cancer organizations to create a social media awareness campaign with an even broader reach, one that will motivate people to take specific actions in the fight against lung cancer. We will be brainstorming that campaign in the September 11 #LCSM Chat. Members of several lung cancer advocacy organizations plan to participate.

Listed below are some #LCAM14 ideas we will discuss. Feel free to suggest others during the chat!

#WhipLungCancer Videos
You may have noticed the #WhipLungCancer video campaign (started by @LungCancerFaces Deana Hendrickson) on social media over the past week. You can find several videos created by patients and advocates by searching Twitter and Facebook for the #WhipLungCancer hashtag. Note what these videos have in common: they share facts about lung cancer, suggest a place to donate of the author’s choosing, and use whipped cream in fun ways. Be creative!

LUNGCAN Activities
LUNGCAN (Lung Cancer Action Network) is a group of 19 lung cancer advocacy organizations. This year they are launching a collaborative effort for Lung Cancer Awareness Month with three planned phases:

Phase 1 (tentatively Oct 6-Nov 10). Encourage people to provide input to Centers for Medicare and Medicaid Services (CMS) in support of lung cancer screening with low-dose CT scans (LDCT). The last day for providing input to CMS is November 10. LUNGCAN is building a web page on its site with info on how to take action.

Phase 2 (Nov 10- 23). Encourage people to participate in “The Lung Cancer Project” . This Genentech-sponsored online survey captures subconscious perceptions of lung cancer stigma; read more here. LUNGCAN particularly hopes to attract more healthcare providers as survey participants.

Phase 3 (Nov 24-31). Promote radon awareness and encourage people to acquire a radon test kit to use in their home.

Topic Questions During Chat

We look forward to seeing you in the chat! To participate in the chat, remember to include #LCSM in all your tweets, or use a tweetchat tool like tchat.io with that hashtag (more on that here). We will be discussing these four topics:

T1: What social media activities could best support LUNGCAN’s plan for #LCAM14?

T2: In what other ways might the #LCSM community use social media to promote lung cancer awareness during #LCAM14?

T3: How might #LCSM Chat website assist with #LCAM14 social media activities for the #lungcancer community?

T4: Wrap up: What social media action(s) will you personally commit to take during #LCAM14?