#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?

#LCSM Chat Topic 8/28: “What would you like to see on the #LCSM Website?”

Our 8/28 #LCSM Chat (at 8 PM ET, 5 PM PT) will be a brainstorming session about possible improvements to the #LCSM website.

Our #LCSM website, intended primarily to inform people about #LCSM Chat and its activities on Twitter, is pretty basic and is maintained by a couple of volunteers in their spare time.  Since #LCSM is not affiliated with any nonprofits and does not fundraise, we don’t add many bells or whistles.

Thanks to supporters, we do occasionally receive some funds we could use to improve the site. Because #LCSM is a collaboration that stretches across the entire lung cancer community, we’re in a unique position to offer information and features on our site that reinforce that collaboration. However, we don’t want to duplicate other sites that support or advocate for lung cancer patients and their families.

So, the question is, what website improvements would be most useful to the #LCSM community, without duplicating aspects of other lung cancer sites?  Our moderator Janet Freeman-Daily will raise the following questions for discussion:

T1: What information would you like to see added to the #LCSM site that would reflect our collaboration across the lung cancer community?

T2: What new features might be added to the #LCSM site that would build collaboration across the lung cancer community?

T3: How might you help #LCSM implement these site improvements?

We look forward to seeing you in the chat! Remember to add #LCSM to your tweets, or use a tweetchat tool like tchat.io (more on that here).

Want to learn to Tweetchat?

The #LCSM founders know some people don’t participate in our Lung Cancer Social Media chats because they are uncertain how to participate in a chat on Twitter, or don’t yet feel comfortable with it. Other cancer- and healthcare-related tweet chats out there probably have heard similar concerns.

We’d like to help people become more comfortable with participating in healthcare tweet chats.  To address this need, #LCSM will conduct a PRACTICE TWEET CHAT this Thursday, August 21, from 5-6 PM Pacific Daylight Time.  This is open to anyone in the healthcare community.  We’ll have no agenda, just a chance to test your tweet chat skills and ask questions. Janet Freeman-Daily will be moderating.

Here’s how to get started:

To participate in a tweetchat using Twitter:

1. Create a Twitter account and sign in.

2.  To see the tweets in the tweetchat, filter your Twitter feed to show only tweets containing the designated hashtag (in this case, “#LCSM”).  To filter your Twitter feed, enter “#LCSM” in the gray box containing the magnifying glass at the top of your Twitter feed.  The box is outlined in red for emphasis in the example below.  Be sure to click on “All” below the words “Results for #LCSM” — if you don’t click on All, your feed will only show you some (not all) of the tweets containing #LCSM.

how to filter for #LCSM

3.  To add your tweets to the chat, include the designated hashtag (in this case “#LCSM”) in every tweet you want to be seen in the chat.

To participate using a tweetchat tool:

You’ll find it much easier to follow and participate in the chat by using a tweetchat tool like tchat.io. To do this:

1. Sign in to Twitter.  Be sure your Twitter privacy settings allow anyone to see your tweets.

2.  Enter the URL “tchat.io” in your browser (or click here to be taken to that URL).

3. Enter the designated hashtag “#LCSM” in the box on the screen, and click “Start Chatting”

4. Click on “Sign in to get an in-page tweet box” just below the white box, then click “Authorize App” on the next screen to login to Twitter. You’ll then be redirected back to the tchat.io page. This will allow you to type your tweets in the textbox at the top of the page. Tchat.io will automatically add the #LCSM hashtag at the end of your tweet so it will be seen in the chat.

5. Click on “hide retweets” (just below the blue “Tweet” bar). Hiding retweets will make it easier to follow the conversation.

Questions?

If you have questions before or during the tweet chat, or have trouble joining the chat, you can email us at lcsmchat@gmail.com, or tweet to @JFreemanDaily or @LungCancerFaces.

If this experiment proves popular, we may repeat it.

Chat Topic 8/14: How Can We Bring the Benefits of #LCSM to Those Who Are Not Online?

Our 8/14 #LCSM Chat (at 8 PM ET, 5 PM PT) will explore how best to bring the benefits of the online lung cancer community to those who are not on the Internet.  What aspect of #LCSM would benefit them most, and what would be the best way to reach them?  Our moderator Dr. Jack West will raise the following questions for discussion:

T1: What benefits of the #LCSM community would be most useful to those affected by lung cancer who are not online?

T2: How might we extend the #LCSM community to include lung cancer patients and caregivers who are not online?

T3: How might we extend the #LCSM community to include lung cancer healthcare professionals who are not online?

We look forward to seeing you in the chat! Remember to add #LCSM to your tweets, or use a tweetchat tool like tchat.io (more on that here).