#LCSM

#LCSM Chat topic 7/27: Happy birthday #LCSM–four and feisty!

Please join the #LCSM Chat on Thursday, July 27, at 8 pm Eastern Time (5 pm Pacific) to celebrate our fourth birthday.

First, a little history….the #LCSM hashtag was originally used by @subatomicdoc (Matt Katz, MD) to represent Lung Cancer Social Media on June 22, 2013. The first-ever #LCSM Chat occurred on July 25, 2013.  Seventy-two patients, advocates, caregivers, family members, educators, healthcare providers, and researchers participated. The first #LCSM Chat topic question was “It’s our community. What do you hope to get out of #lcsm chat?”  The answers were diverse and wide-ranging, reflecting the interests of a broad-based lung cancer community. Most importantly, this platform was a revelation—no other forum allowed all stakeholders in the lung cancer community to communicate directly with each other.

Since that time #LCSM has come a long way. During the past year, the #LCSM hashtag was used in almost 99,000 tweets from 13,227 participants and generated over 416 million impressions! We’ve chatted about wide ranging  subjects as direct to consumer advertising in lung cancer, the best tools for online cancer education, why multidisciplinary tumor boards are important, and dealing with grief over cumulative losses in the lung cancer community. We conducted a Facebook Live Q&A on immunotherapy and clinical trials jointly with the National Cancer Institute, a second Facebook Live event What I Like About the IASLC World Conference on Lung Cancer, and “open mic” nights to hear about what is important to all of you. Throughout all of this, our mission has remained the same: to use social media in an innovative manner to educate, develop public support, end the stigma, and facilitate successful treatments for the leading cause of cancer deaths worldwide.

To celebrate our fourth birthday, moderator @JFreemanDaily will lead the #LCSM Chat in discussion of the following topics.  We’re hoping to compare the answers from this year’s birthday chat to those of last year to see how #LCSM is evolving in the eyes of community members.

  • T1: How has #LCSM affected your understanding of #LungCancer?
  • T2: How well did #LCSM help to disseminate the most important #lungcancer news and events in the past year?
  • T3: How could #LCSM better increase #LungCancer awareness, advocacy, and research funding?
  • T4: How might #LCSM partner with other groups or social media stakeholders for future events?
  • T5: Should #LCSM Chat expand to use other platforms besides Twitter? If so, which one(s)?

Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here.  Hope you’ll join us to celebrate the fourth birthday of Lung Cancer Social Media!

 

#LCSM Chat Topic 7/13: Balancing Connection to Others in the Cancer Community with the Risk of Loss

IMG_4066Jack West, MD

My father, now a retired radiologist, provided the first characterization of medical oncologists I ever heard, describing them as “the coldest people I ever met.” Thankfully, I’ve had the opportunity to work with, and I hope become, a caring and empathetic medical oncologist, but I think his perception comes from the resignation many oncologists have historically felt when so many patients die despite our best efforts. Oncologists, cancer surgeons, and other health care professionals have long struggled with the hope of developing and maintaining a relationship with their patients who may do well but who, all too often, eventually succumb to cancer.

Today, #LCSM is one of many online communities, which enable people from all over to share experiences, helpful suggestions, hopes, and fears together. We celebrate the value of these connections, helping people navigate the uncertainty of a new diagnosis and the start of a treatment, letting people share a “happy dance” triggered by positive scans, but also leaving people feeling the sharp loss when others in the community experience a clinical decline. The grief of learning that a beloved longtime member of an online community has died is often every bit as acute as the loss of a friend or family member “in real life.” Here is the dark counterpoint to the deep positive connections we can develop and share in online cancer communities.

For this week’s #LCSM chat, we’ll reflect on the losses many have felt recently as longtime members have passed and consider if there is any “right” way to share a relationship with someone with cancer, whether in person or in an online context, without being devastated by the potential loss of that valued connection. Whether physician, nurse, patient, or caregiver, we all face this challenge, so we will address the following questions together:

1) Are there ways to honor loved connections, including in online communities, without becoming overwhelmed w/grief? #LCSM

2) If a member of online community dies, is the sense of loss a necessary complication of strong online relationship? #LCSM

3) If many dealing w/death regularly learn to cope by developing emotional distance, should those in online communities want this? #LCSM

4) How much empathy should a #cancer pt & their physician share? Should there be professional distance in therapeutic relationship? #LCSM

5) What techniques do you use to manage the emotions generated by deaths of #lungcancer patients you know? #LCSM

Please join us for our next #LCSM chat on Thursday, July 13th, at 8 PM Eastern, 5 PM Pacific, to take the time to reflect on how we can best cope with losses of those we have come to care about, including in the relatively new capacity of participating together in an online community.

#LCSM Chat Topic 6/29: When Doctors Disagree

second-opinion

Increasingly, the care of lung cancer patients has become a multi-doctor, multi-disciplinary job.  Gone are the days (thankfully!) when a paternalistic doctor prescribed a treatment plan that was unquestioned by the patient.  The internet and ease of travel have allowed unprecedented access to information and to physicians.  As more treatment options and strategies become available for lung cancer patients, it is inevitable that they will be faced with differing opinions from their physicians with regard to how to personalize their care.  Examples are plentiful, such as decisions between surgery or radiation therapy for early stage lung cancer, recommendations for chemotherapy or immunotherapy for advanced cancer, or even decisions whether to treat some patients at all.  While lung cancer patients and their doctors would like to think that such important decisions should always be guided by obvious evidence based medicine, the reality is that clinical trials cannot address every individual patient scenario or keep up with the pace of medicine today.  And without doubt, many physicians have their own biases towards different treatment strategies.  How then, should a patient deal with differing opinions?  Are there warning flags?  Are there important questions to ask when this situation arises?

With that in mind, we will cover the following topics and questions:

T1:  What are common scenarios in which you have seen lung cancer doctors disagree?

T2:  When getting a 2nd opinion, should the new Dr. be given the opinion of the first before developing his/her own treatment plan?

T3:  What questions should you ask a doctor who disagrees with another doctor about your treatment?

T4:  What resources can patients use to share in their own decision making if different treatment options exist?

Please join the #LCSM community and moderator @BrendonStilesMD for our next #LCSM Chat on Thursday, June 29th, at 8 pm Eastern Time (5 pm Pacific).  Although #LCSM Chat focuses on lung cancer, this scenario arises across all fields of medicine.  As such, we would love to have other patients, advocacy groups, and physicians participate.  Please join us! If you’re new to tweet chats, read a primer on participating in the chat here.

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