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

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The following post is reblogged with permission from today’s #LCSM Chat blog.

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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).

Why Advocates Seem to Talk So Much About Lung Cancer Screening

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On Thursday, September 25th, 8PM ET/ 5PM PT, #LCSM Chat will discuss the existing barriers in lung cancer screening in late 2014.

Recently I’ve heard some lung cancer patients say they feel abandoned by lung cancer advocacy groups.  These patients think the groups are focusing too much on early detection with lung cancer screening, and have abandoned those who already have the disease.

As a metastatic lung cancer patient, I don’t feel abandoned.  I feel lung cancer advocacy has never been more vibrant or successful than it’s been in the past year.  In the past year, lung cancer advocacy has featured:

  • Wide-spread national media coverage about lung cancer: Valerie Harper on “Dancing with the Stars” and other national shows, national news coverage of testimony on Capitol Hill about the need for lung cancer research funding, the “Turquoise Takeover” of prominent landmarks, and Molly Golbon’s cancer journey documented on NBC, for example.
  • Print and online articles discussing the need to eliminate lung cancer stigma and featuring the hope offered by new treatments and clinical trials.
  • More advocates, patients, doctors, and researchers posting and collaborating with the #LCSM hashtag on Twitter.
  • An increase in lung cancer bloggers compared to last year.

The focus of lung cancer advocacy hasn’t shifted away from research or treatments.  By my count, there are more new treatment options offered or announced this year for a wider range of lung cancer types than in any previous year: two new FDA-approved targeted therapies,  immunotherapy trials for all lung cancer types, an innovative new trial for squamous cell LC, a new study of Young Lung Cancer, new targeted drugs for mutations, newly-discovered mutations … the list is long.

Lung cancer screening with LDCT is a big deal because it is projected to save 18,000 lives PER YEAR by catching lung cancer before it spreads.  That’s more lives than most new targeted lung cancer treatments will save in a year.

We’re seeing more public discussion of lung cancer screening than treatments for four reasons:

(1) Lung cancer screening with LDCT gained major support at the end of 2013.
In December 2013, the US Preventative Services Task Force recommended lung cancer screening with LDCT.  As a result, the ACA now requires private insurance plans to cover LDCT as of January 2015.

(2) LDCT is becoming more available.
More hospitals and clinics are beginning to offer LC screening with LDCT, and are advertising that fact.

(3) The need for support is urgent.
The majority of lung cancer patients are over age 65.  In February, the Centers for Medicare and Medicaid (CMS) began evaluating whether to provide insurance coverage for LC screening with LDCT.  CMS will decide in November.   We must act NOW.

(4) Individual advocates have a chance to make a difference that will save lives.
The CMS decision is being made by a branch of the US government.  Our voices are needed to ensure those over 65 have access to LC screening, since most of them have Medicare as their primary insurance.  Lung cancer advocacy organizations are leading the charge.

The lung cancer community is still dedicated to raising awareness for ALL lung cancer patients and increasing research that will allow more lung cancer patients to be cured or to live with lung cancer as a chronic illness.   Advocating for LC screening is just one way to help more patients survive.  It’s part of the 2014 sea change in lung cancer.

#JACR Chat 6/26: Patient Perspective on Lung Cancer Screening (#LCSM cohosts)

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(This is a reblog of today’s blog on the #LCSM website)

On Thursday June 26, at 12 noon Eastern Time, the Journal of the American College of Radiology (#JACR) tweetchat will discuss the patient’s perspective of lung cancer screening.  It will be hosted jointly by #JACR and #LCSM, using the hashtag #JACR, and will be moderated by Dr. Ruth Carlos (@ruthcarlosmd) of #JACR with guest moderators Ella Kazerooni, MD, and Janet Freeman-Daily (@JFreemanDaily) of #LCSM.  #JACR posted about the chat and provided the following information:

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“Ruthie, your dad fell down and now he has cancer.”

My dad had tripped down a short flight of steps to the basement.  In Urgent Care, he received a chest X-ray for shoulder pain, inadvertently detecting his lung cancer.  I was grateful that he accidentally fell, grateful that he received a chest X-ray rather than shoulder X-rays, grateful that I still have my dad, a 70 year old man who smoked two packs a day since he was 18.

The survival rate for early stage lung cancer is nearly 50%.  The survival rate for late stage disease is less than 5%.  The U.S. Preventive Services Taskforce (USPSTF) recommends a more systematic way to screen individuals like my dad:  use low dose computed tomography, also known as low dose CT or LDCT, to find early stage lung cancer.  The National Lung Screening Trial  enrolled more than 53,000 participants in a study. It showed lung cancer screening with LDCT resulted in 20% fewer deaths from lung cancer compared to screening by chest x-ray.  On the strength of these findings, the USPSTF showed strong support and issued a “Grade B recommendation” for lung cancer screening with LDCT, requiring private insurance plans to completely cover this service.  Medicare administrators now are weighing the decision to cover lung cancer screening, balancing the benefits with the unintended harms.

Some of the harms associated with lung cancer screening include “false-positives”—detected nodules or tumors that are actually not cancer.  Low dose CT can also detect abnormalities outside the lungs, such as thyroid nodules or heart problems.  These are called “incidental findings” or “incidentalomas,” most of which are benign.  However, because a small percent of incidentalomas turn out to be potentially harmful, additional diagnostic testing may be required. These additional procedures can lead to increased cost to the patient, even if the screening test is free.  Both false positives and incidentalomas can potentially increase patient anxiety, test-associated radiation, and out-of-pocket costs.

Understanding patient concerns about lung cancer screening is essential to fully implementing this life-saving medical service of LDCT.  Patient-Centered Outcomes Research, or PCOR, focuses on addressing patient questions such as “What can I do to improve the outcomes that are important to me?” and “How can clinicians and the care delivery systems they work in help me make the best decisions about my health?” Per a USPSTF recommendation, the ECOG-ACRIN cancer research group proposes to develop a registry of participants who receive lung cancer screening in order to understand the full patient experience, including what outcomes, benefits and harms are most meaningful to patients, how to consistently communicate these benefits and harms, and how to support patient choice regarding screening. ECOG-ACRIN is one of the National Cancer Trials Network groups launched this year by the National Cancer Institutes. It is implementing PCOR principles in the development phase of the registry to incorporate patient voices and perspectives.

Here are the four questions that will be discussed during the Tweet Chat:

T1: What clinical, psychological and cost outcomes are most important to patients who receive lung cancer screening?  #JACR

T2: Some lung nodules detected by lung cancer screening are “false positives” (not cancer).  What effect would this have on you? #JACR

T3: Lung screening might detect other conditions (e.g., thyroid and heart) needing more tests. What concerns you about this? #JACR

 T4: What aspects of lung screening benefits and harms are difficult to understand? How might understanding be improved? #JACR

If you would like to be considered for a patient advisory panel about lung cancer screening or want to tell us about your experience, email us at lungscreeningregistry@gmail.com.

Moderators for This Chat

@ruthcarlosmd (Ruth Carlos, MD), Deputy Editor for JACR and Co -Chair of the ECOG-ACRIN Patient Centered Outcomes and Survivorship Committee. 

@JFreemanDaily (Janet Freeman-Daily) , cofounder and comoderator for Lung Cancer Social Media #LCSM Chat on Twitter.

Special guest: Ella Kazerooni, MD, Cardiothoracic Division Director and Professor of Radiology at the University of Michigan, is the Vice Chair of the National Comprehensive Cancer Network (NCCN) lung-cancer screening panel.  She recently testified before the Medicare Evidence Development & Coverage Advisory Committee on the value of lung cancer screening and the need for Medicare coverage of LDCT.

The Power of Lung Cancer Social Media (#LCSM)

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Today the Seattle Times published a guest op-ed piece co-authored by myself and Renée Klein, the President and CEO of the American Lung Association (ALA) of the Mountain Pacific.  You can read it here: Medicare should cover low-dose CT screening for lung cancer.

While I hope you’ll read it, that’s not why I’m blogging today.  I’m blogging because I want you to know something.

This op-ed piece was made possible by the power of Lung Cancer Social Media (#LCSM).

When I proposed co-authoring this piece to Renée, she enthusiastically agreed. However, we only had two days and 650 words in which to write it.  I knew the piece required a lot of facts to support the opinion, but which facts about lung cancer screening with low dose CT would have the most impact? Which facts were the most current?  How should we structure the facts to make our point within word count? And where on the web were the sources? The Seattle Times required links to sources before they would accept the piece.

The Lung Association had several necessary facts collected with source citations on one of their webpages.  Their researchers found a few more.  The rest were scattered all over the web. I didn’t have much time to find them, especially when I didn’t know which sources we needed yet.

As I sat staring at a blank Word document trying to compose my thoughts, a fellow founding member of the #LCSM Chat, Deana Hendrickson (@LungCancerFaces), texted me about another subject.  Then it hit me.  I had at my literal fingertips a ready-made community of passionate lung cancer patient advocates and healthcare professionals, each of whom had already demonstrated their desire to see Medicare cover lung cancer screening with low dose CT.  In fact, the #LCSM community had created a change.org petition on this subject in February.

So I made use of those connections. I sent emails and Twitter direct messages to other #LCSM Chat regulars: thoracic surgeon Dr. David Tom Cooke (@UCD_ChestHealth), radiation oncologist Dr. Matthew Katz (@subatomicdoc), and fellow advocates Deana, Laronica Conway (@louisianagirl91), and Andrea Borondy Kitts (@findlungcancer).  Even though they were located thousands of miles from me and were busy with their own jobs and lives, they all responded within an hour. Over the next 24 hours, they helped brainstorm the structure of the piece, provided links to sources they knew, and waded through Google for the additional facts needed to round out the argument.  Andrea carried the research one step further by discussing a difficult point with the lead author of a relevant journal article–he just happened to be in a meeting she attended that afternoon– and feeding me answers in real-time texts.  All of them also reviewed rough drafts and added insightful comments.  It’s as if we were intended to work this project together at that particular time.

Because of  the #LCSM community, my co-author, and my writing critique group (who just happened to be meeting the night I completed the first draft), 23 citations were thoroughly researched and four drafts including the final were completed in less than two working days.

I am amazed and humbled by the dedication displayed every day by the #LCSM community in the fight against lung cancer.

Thanks, everyone.  It truly takes a village.

#LCSM Chat Preview March 13 – Stress, Anxiety and Lung Cancer: How Do You Cope?

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The post below is reblogged with permission from the LCSM website.

Patients and caregivers experience considerable stress and anxiety as a result of lung cancer diagnosis and treatment. How do you handle stress? Is it possible to prevent stress or is it ‘just a part of life’?  Some individuals handle stress and anxiety better than others. We want to explore this topic in more detail during this week’s #LCSM chat.

T1: What kinds of stress do lung cancer patients experience due to their cancer diagnosis or treatment?

 T2: What can healthcare providers do to help reduce stress for a lung cancer patient or caregiver?

 T3: What can patients and caregivers do to help reduce stress for themselves and each other?

Our guest for this chat will be Dr. Niki Barr, (@nikibarrphd), a Dallas, Texas, based psychotherapist who specializes in working with cancer patients and their families and teaches them how to “move through the continual challenges of cancer with emotional wellbeing”.

We know this is a very sensitive subject and we don’t expect anyone to share his or her most personal stories in such an open forum.  So we are offering an opportunity for you to submit questions to Dr. Barr in a confidential setting.  If you have a question you’d like answered or addressed during the chat, please email us at lcsmchat@gmail.com.  Only those of us associated with #LCSM Chat will be privy to the contents of the email. We will then forward the questions to Dr. Barr for possible use during the chat. Please note that if we use your question, we won’t use your name. 

 Please join us Thursday, March 13, 7 CT/8 ET, for an in-depth conversation about stress and anxiety associated with a lung cancer diagnosis. 

Thoughts or questions? Email us directly at lcsmchat@gmail.com, leave a note on our blog or send us a direct message on Twitter, @lcsmchat.

#LCSM Chat 27-Feb-14: What do cancer patients want from their doctors and online support groups?

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[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

 

The focus for the next #LCSM Chat at 8 PM Eastern (5 PM Pacific) on Thursday, February 27, 2014 will be “What do cancer patients want from their doctors and online support groups?” The moderator will be Dr. Jack West.

Online cancer support groups can provide a wealth of information and understanding for cancer patients, caregivers, and family members. Many in online forums find expertise and credibility among others who have traveled down the same road. “Expert patients” in these forums can provide an understanding and hope that even the best doctor can’t offer, because they’re living proof you can understand your treatment options, and your treatment can work. And online groups are available 24/7, for free.

However, different patients seek out different levels of information, both in these forums and with their doctors. Some want to know all the available facts, including survival data in the tables and figures shared among oncologists. Others prefer to trust their doctors and hope for good results. This leaves doctors wondering if providing a frank discussion of statistics (which might not be encouraging) would inform, confuse, or scare patients.

Also, different patients are comfortable with different levels of self-advocacy. Some express a strong desire for self-determination of their treatments, while others want a clear recommendation from a trusted oncologist about the a best way to proceed.

Given the diversity in cancer patient needs and wants, our upcoming #LCSM tweetchat on will focus on the following questions:

1) Do the shared experiences of patients provide value and credibility that can’t come from medical professionals?

2) Given the growing movement to give patients their data, should doctors share stats like survival numbers with the patients? If so, when?

3) Do engaged, empowered patients want a clear recommendation from their doctor, or a presentation of pros and cons so they can choose among the options?

We hope that those of you who use Twitter as a communication tool will join us by following the hashtag #LCSM on Thursday. Feel free to also comment here, before or after the tweet chat.

Background

Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?
by Dr. Jack West on cancergrace.org

ePatients: Engaging Patients in Their Own Care by Medscape

Society for Participatory Medicine

Are physicians ready for the e-patient movement? on KevinMD.com

Can we erase lung cancer stigma without mentioning “smoking”?

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Some people have indicated my previous post (Dear lung cancer patient who smoked) reinforces a division within the lung cancer community (those who smoked versus those who didn’t).  That wasn’t my intention.  In fact, it was a division I was trying to heal. If I offended anyone, I apologize.

Like any group of people, those of us in the lung cancer community are individuals.  We differ in many ways:  age, physical fitness, financial status, geographic location, family relationships, gender, sexual orientation, smoking history, nutritional choices, weight, desire for privacy.  Our close personal experience with lung cancer is the only thing we all have in common.

Lung cancer patients and advocates talk about the stigma of lung cancer (which is largely associated with smoking) because we and others we know have experienced it. It is real. If we don’t talk about the stigma, who else will?

One approach to erasing the stigma is to show the world the diversity among lung cancer patients. Somehow we need to show the public that lung cancer patients don’t fit one mold.  To do this, we have to reveal our differences. The perception of HIV patients changed in part because patients with different personal characteristics spoke out and showed the world the diversity among HIV patients.

The fact that we talk about our differences doesn’t imply any judgment or preferred categories among us, although some people will always attempt to pigeonhole people in that manner.  We can acknowledge our differences and still accept each other.  Attempting to show the diversity within the lung cancer community in no way implies any judgment that some personal characteristics or habits are “better” than others. But somehow, no matter how carefully phrased, discussions about stigma that involve the word “smoking” seem to make some people feel even more stigmatized.

If you have ideas how we can demonstrate the diversity within the lung cancer community without mentioning the word “smoking,” I’d love to hear them.  Please share them in the comments section here, in our upcoming February 13 #LCSM tweetchat, or in an email to me at jfreeman.wa at gmail.com.

#LCSM Chat 13-Feb-2014: “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”

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[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

Erasing the stigma of lung cancer is one of the goals of all advocates who fight for more lung cancer awareness and funding.  But sometimes it’s hard to know how to go about it.

The focus of the #LCSM Chat on February 13 will be “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”  Imagine we have unlimited funds, political influence in all the right places, ready access to every medical professional, and all the trained, eloquent workers we need.  What actions would erase the stigma of lung cancer?

Our moderator for this chat, Laronic Conway, will use these topics to get the discussion going:

  • T1: How would you erase lung cancer stigma among individuals? Billboards? Front-page articles? Doorbelling? Be specific.
  • T2: How would you erase lung cancer stigma among healthcare professionals? What would you need to do this?
  • T3: How would you erase lung cancer stigma among government officials and lawmakers? What would you need to do this?
  • T4: How would you erase lung cancer stigma among lung cancer patients and their families?

To prepare for this chat, you might wish to read some of the articles about lung cancer stigma on our new “Lung Cancer in the Media” page.

Guidelines on how to participate in an #LCSM Chat can be found on the “#LCSM Chat” page of the #LCSM website. Hope to see you on Twitter!

#LCSM Salutes World Cancer Day

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[This is a reblog of a post on the #LCSM blog.  Reposted with permission]

Tomorrow, February 4th, is World Cancer Day. The focus this year is Target 5 of the World Cancer Declaration:  reduce stigma and dispel myths about cancer. The World Cancer Day campaign seeks to “Debunk the myths” of cancer:

  • We don’t need to talk about cancer
  • There are no signs or symptoms of cancer
  • There’s nothing I can do about cancer
  • I don’t have the right to cancer care

This focus parallels the goal of #LCSM “to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.”

On World Cancer Day, we hope the #LCSM community will take the opportunity to tweet about lung cancer as well as cancer in general.  Be sure to use “#LCSM” as well as “#WorldCancerDay” in your tweets so followers of both communities can see them. You can find a list of tweet-sized facts and the supporting documents on our Lung Cancer Facts page.  Or, if you prefer, just retweet #LCSM tweets that appear during the day.

Happy tweeting!

Palliative Care for Lung Cancer Patients (#LCSM Chat 16-Jan-2014)

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[This is reposted with permission from the #LCSM Chat website]

The next #LCSM Chat will occur on Thursday, January 16, 2014 at 5 PM Pacific (8 PM Eastern). The subject will be “Palliative Care for Lung Cancer Patients” moderated by lung cancer patient and advocate Janet Freeman-Daily. Please note this discussion will focus on comfort care provided to a cancer patient at any time after diagnosis–before, during or after active treatment. We will not be discussing hospice.

#LCSM has invited several palliative care specialists to participate in this chat. Confirmed guests include @ctsinclair (Christian Sinclair, MD, #hpm chat co-founder, editor of pallimed.org), and @chatburn (Andi Chatburn, MD, kansascityhospice.org).

You can learn more about how to participate in an #LCSM tweetchat here. If you find tweetchats are not your cup of tea, please feel free to add your questions or concerns about palliative care in the comment section of this blog post by noon Thursday January 16, and we’ll do our best to address them during the chat if time allows.

Chat Topics

T1: What services and benefits can palliative care specialists provide to lung cancer patients and their families?

T2: How can we help patients, family members and medical professionals understand differences between palliative care and hospice?

T3: How might healthcare providers best introduce the topic of palliative care to their lung cancer patients?

T4: How can we help more lung cancer patients take advantage of palliative care services?

Background

The key points of the National Cancer Institute’s factsheet on palliative care say:

  • Palliative care is comfort care given to a patient who has a serious or life-threatening disease, such as cancer, from the time of diagnosis and throughout the course of illness. It is usually provided by a specialist who works with a team of other health care professionals, such as doctors, nurses, registered dieticians, pharmacists, and social workers.
  • Palliative care is different from hospice care. Although they share the same principles of comfort and support, palliative care begins at diagnosis and continues during cancer treatment and beyond.
  • Hospitals, cancer centers, and long-term care facilities provide palliative care. Patients may also receive it at home. Physicians and local hospitals can provide the names of palliative care or symptom management specialists.
  • Palliative care addresses the emotional, physical, practical, and spiritual issues of cancer. Family members may also receive palliative care.
  • Research shows that palliative care improves the quality of life of patients and family members, as well as the physical and emotional symptoms of cancer and its treatment.

A clinical trial conducted at the National Cancer Institute found palliative care improves survival and quality of life in advanced lung cancer. However, as discussed in a 2011 Los Angeles Times article, the palliative care specialty still faces challenges. A New England Journal of Medicine article recently stated, “Palliative care suffers from an identity problem. Seventy percent of Americans describe themselves as ‘not at all knowledgeable’ about palliative care, and most health care professionals believe it is synonymous with end-of-life care.” The challenges are even greater in developing countries. A global survey by the European Society for Medical Oncology found “a ‘pandemic of untreated cancer pain’ caused by too strict regulation of pain medication.”

More Information About Palliative Care

American Academy of Hospice and Palliative Medicine

Center to Advance Palliative Care and their patient-focused site

National Palliative Care Research Center