#LCSM

#LCSM Chat Topic 3/10: Living Metastatic (#AMSM)–common experiences across cancers

AMSM chat graphic

#LCSM Chat believes there is value in building community across advanced and metastatic cancers.  Advanced and metastatic cancer patients have concerns beyond those of earlier-stage patients. To recognize this, Symplur has registered a new hashtag: #AMSM (Advanced and Metastatic Social Media).  #AMSM is a special concern for lung cancer, since more than half of lung cancer patients are metastatic at diagnosis.

To help build the #AMSM community, the #LCSM Chat on 3/10 at 8 pm ET (5 PM PT) will be “Living Metastatic– common experiences across cancers.” We will use the #LCSM hashtag to chat, but include #AMSM in our tweets.  Information on how to join the chat can be found on the “Participate” page of the #LCSM Chat website (https://lcsmchat.com/lcsm-chat/).

The chat moderator will be Janet Freeman-Daily (a metastatic lung cancer patient). We have confirmed some special guests from different cancer communities (as of 3/8 PM):

  • Corrie Painter (@corrie_painter), Associate Director of the Metastatic Breast Cancer Project
  • Michele Coston Longabaugh (@crazyasscancer), metastatic anal cancer survivor/advocate
  • Rich McDonald (@hotelmelanoma), advanced melanoma survivor/advocate
  • Dawn Eicher (@dawneicher), metastatic colon cancer survivor/advocate
  • Roberta Luna (@halfcrazy_luna), pancreatic cancer survivor/advocate and caretaker 

Our topic questions for this chat will be:

  • T1: How is delivering/receiving an advanced or metastatic cancer diagnosis different than earlier stage diagnoses? #AMSM #LCSM
  • T2: How can we best help patients process the shock of an advanced/metastatic cancer diagnosis? #AMSM #LCSM
  • T3: What aspects of living with advanced/metastatic cancer are typically the most difficult? #AMSM #LCSM
  • T4: How would an advanced/metastatic cancer community be helpful to you? #AMSM #LCSM

 

#LCSM Chat topic 2/25: Communicating patient goals and values for #lungcancer treatment

   

The best lung cancer care considers the patient’s goals and values when choosing a treatment. However, identifying and communicating those goals is not always a straightforward process for either the care provider or the patient.  

This week’s #LCSM Chat explores the process of communicating patient goals and values. Care providers need to know how to elicit them. Patients (even those who want to leave treatment decisions entirely to their doctors) must be able to identify and express them, and, if need be, initiate a conversation about them.  

Choosing the right treatment and care for a lung cancer patient is a matter of weighing risks of side effects versus evidence that the treatment has a good chance of success. Physical side effects can run the gamut from mildly annoying tummy upset to life-threatening organ failure. Yet sometimes a drug that causes severe side effects might result in cure or prolonged No Evidence of Disease. While the doctor or other care provider can learn about the risks and benefits for specific treatments from medical literature, only the patient knows what risks they are willing to accept to achieve their individual treatment goals. 

Willingness to tolerate risks varies from patient to patient. Some patients (perhaps those with small children) might favor an aggressive new treatment with the goal of living as long as possible regardless of side effects. Others (perhaps those who have additional health problems that would be dangerously aggravated by cancer treatment) may choose to forego active treatment and aim to be comfortable enough to attend a dear friend’s wedding in six months.  

In addition to physical side effects, patients also have financial, logistic, cultural and family concerns. Although it would be wonderful if all cancer patients had sufficient resources to access the most effective treatment options and the best care, we know this is not the case. Some patients must make treatment choices based on their ability to pay or to travel to a treatment site–a cancer center may not covered by the patient’s insurance, or may be hundreds of miles away. Unfortunately, bankruptcy is not a rare side effect of cancer treatment.  

The discussion of patient goals and values must continue throughout a patient’s lung cancer treatment, because patient preferences may change over time. An early stage patient might choose to be aggressive in their first-line treatment in hopes of a cure. Yet that same patient may find that after their cancer has become metastatic and they have had three different aggressive cancer treatments, they hesitate to try another treatment likely to have severe side effects. 

Some patients are comfortable trusting their doctors to determine whether the potential benefits of a treatment are worth the potential side effects, while other patients prefer to participate in shared decision making. Both approaches are valid choices, but in both cases, one would hope that one’s doctors would consider each patient’s goals and values when weighing treatment options.  

However, the process each care provider uses to determine patient goals and values is far from standardized. It is not a skill that has been (or is currently) taught in most medical schools. Sometimes the process doesn’t happen. 

During our chat on February 25 at 8 PM Eastern (5 PM Pacific), moderator Janet Freeman-Daily (@JFreemanDaily) will lead the discussion about communicating patient goals & values for lung cancer treatment using these topic questions: 

  • T1: What are examples of patient goals & values that would be helpful in discussions of #cancer treatment? #lcsm
  • T2: How can we encourage patients (including those who want to leave decisions to docs) to think about treatment goals & values? #lcsm
  • T3: How might care providers solicit patients goals & values for #lungcancer treatment? Are any topics (e.g., cost) off limits? #lcsm
  • T4: How might patients initiate the discussion of their goals and values if their #lungcancer care provider doesn’t ask? #lcsm
  • T5: How can we encourage discussions of goals and values between #lungcancer care providers and patients? #lcsm

We hope you will join the 2/25 chat. Remember to add the hashtag #LCSM to your tweets during the chat so other chat participants can see them. For more info, check out how to participate in #LCSM Chat. If you can’t join us, please leave your comments below.   

References

“Patient-centered: providing care that is respectful of and responsive to in­dividual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”  Institute of Medicine, CROSSING THE QUALITY CHASM: A NEW HEALTH SYSTEM FOR THE 21ST CENTURY, p. 3

Patient-Centered Communication and Shared Decision Making,” National Academies Committee on Improving the Quality of Cancer Care, Delivering High-Quality Cancer Care, Chapter 3.

#LCSM Chat Topic 11-Feb: Online collaboration and support in the #LCSM community

Since June 2013, the #LCSM hashtag has been used by over 20,000 Twitter accounts, tweeted over 186,000 times, and generated over 541 million impressions.

Participants include lung cancer patients, caregivers, family members, advocates, healthcare providers, hospitals, researchers, nonprofits, government agencies, journalists, pharma and the biotech industry. They use the hashtag to track new treatments, find patient resources, broadcast new research findings, develop advocacy activities, and connect with other lung cancer community members they might not find otherwise.

#LCSM Co-Founder Janet Freeman-Daily will be presenting a research poster titled “Online Collaboration and Support in the Lung Cancer Social Media (#LCSM) Community” at the American Association for Cancer Research (AACR) Annual Meeting in April, as part of her duties in the AACR Scientist-Survivor Program.

To help Janet gather information for her poster, moderator Deana Hendrickson will lead the February 11, 2015 #LCSM Chat using the following questions:

  • T1: How does #LCSM foster collaboration across the lung cancer community?
  • T2: What support or other benefits have you received from your participation in the #LCSM community?
  • T3: What #LCSM event, activity, or accomplishment has meant the most to you?
  • T4: How can cancer researchers benefit from participating in the #LCSM community?

If your answers won’t fit in 140 characters, please post them as comments to this blog.  We will create a survey on this topic based in part on the answers we receive in this chat.

We hope you’ll join moderator Deana Hendrickson on Thursday February 11, 2016, at 5 pm PT, 7 pm CT, 8 pm ET. If you’re new to tweetchats, please read this primer on how to participate in #LCSM Chats.