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Posted on October 20, 2014 by

#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).

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Posted on October 8, 2014 by

#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).

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Posted on September 23, 2014 by

#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).

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