##  [Sound Up for Lung Cancer](/news/sound-up "Sound Up for Lung Cancer") 

 It’s time to change the conversation. Patient inspired and community led, Sound Up aims to empower people affected by lung cancer in raising the volume to vocally self-advocate.

 

 Oct 29, 2021 

## Overcoming challenges of living with lung cancer



 



 ![Two million cases](/sites/novartis_com/files/2021-10/sound-up-two-million-cases.gif "Two million cases")

 







Although lung cancer is one of the most common cancers worldwide, many people diagnosed with it feel shame, blame, guilt, or isolation regardless of smoking history—negatively impacting their lives.1-3



 



> Stigma can have serious effects on people living with lung cancer, including around their care. More than anything, as a community, we need to ensure no one feels like they can’t reach out for help and let people know there’s support and hope.
> 
> **Laurie Fenton Ambrose**, co-founder, president, and CEO of GO2 Foundation for Lung Cancer



 

 





These feelings can cause silence.4 Those living with lung cancer can be reluctant to share what they are going through, speak up about their diagnosis, or advocate for themselves, potentially leading people to delay treatment, not remain on treatment, or not seek treatment at all.5

## Taking action

Through Sound Up, we aim to empower people affected by lung cancer to self-advocate by asking questions, expressing their needs, and having open conversations with their health care providers about their experiences.

Every step with a care team directly impacts a person living with lung cancer, which is why self-advocacy is so important. But self-advocacy doesn’t have to be daunting. Here are a few steps people can take6:

- **Gather information**: Check your care center for resources like nurse navigators, oncology social workers, or health education specialists and visit websites of trusted organizations, including those from lung cancer patient advocacy groups
- **Plan for a focused conversation**: Prepare questions you want to ask your doctor at your next appointment and think about the specific topics you want to address
- **Take notes**: It can be overwhelming to receive a lot of information at once, so writing things down to read back again later can help inform what you want to talk about next time
- **Track your wellness**: Tracking your food, sleep, and exercise can help you and your health care team see a bigger picture of how you’re doing
- **Ask about biomarker testing**: A biomarker test can help you and your doctor select the appropriate lung cancer treatment for you
- **Confirm when you’re unsure**: If you have concerns, make sure you’ve explored everything possible

 ![Empowering People](/sites/novartis_com/files/2021-10/sound-up-empowering-people.gif "Empowering People")

 







## Sounding up

While we are at the forefront of progressing advancements in diagnosis, treatment, and care that are giving people hope for a brighter future, there is still much more to do. Together, however, we are going to raise the volume like never before.



 



##  Sound Up Playlist 

  
  var kPlayer = KalturaPlayer_55802022 || KalturaPlayer;
  var config = {
    targetId: "kaltura_player_6a876c68072e8388918257",
    provider: {
      widgetId: "1_dj4x0jqz",
      partnerId: "2076321",
      uiConfId: "55802022"
    },
    playback: {
      autoplay: false,
      autopause: false,
      muted: false,
      loop: false    },
    sources: {
      options: {},
      startTime: 0
    },
    disableUserCache: "true",
    plugins: {},
    sources: {
      options: {},
      startTime: 0
    },
    ui: {
      showCCButton: false,
      settings: {
        showQualityMenu: true,
        showSpeedMenu: false      },
      components: {
        fullscreen: {
          disableDoubleClick: false
        }
      },
      uiComponents: [
        {
          presets: ['Playback', 'Live'],
          area: 'BottomBarRightControls',
          replaceComponent: 'Fullscreen',
          get: kPlayer.ui.components.Remove
        }
      ]
    }
  };

  // Check and add plugins only if they exist
  if (kPlayer.plugins["download"]) {
    config.plugins.download = {
      disable: true    };
  }

  if (kPlayer.plugins["transcript"]) {
    config.plugins["playkit-js-transcript"] = {
      position: "right", // Default: bottom;('left', 'right', 'top', 'bottom') to enable transcript.
      expandMode: "over", // Default: alongside;('alongside', 'hidden', 'over')
      expandOnFirstPlay: false,
      showTime: true,
      downloadDisabled: false,
      printDisabled: false,
      disable: true    };
  }

      if (kPlayer.plugins["preventSeek"]) {
      config.plugins.preventSeek = {
        preventSeekForward: false,
        preventSeek: false      };
    }
    config.plugins.floating = {
      disable: true    };
    if (kPlayer.plugins["navigation"]) {
      config.plugins.navigation = {
        position: "right",
        expandMode: "over",
        expandOnFirstPlay: false,
        visible: false      };
    }
    if (kPlayer.plugins["hotspots"]) {
      config.plugins['playkit-js-hotspots'] = {
        disable: true      };
    }
    if (kPlayer.plugins["moderation"]) {
      config.plugins['playkit-js-moderation'] = {
        disable: true      };
    }
    if (kPlayer.plugins["info"]) {
      config.plugins['playkit-js-info'] = {
        disable: true      };
    }
    if (kPlayer.plugins["share"]) {
      config.plugins.share = {
        disable: true      };
    }
          config.ui.uiComponents = [];
                    if (kPlayer.plugins["googleAnalytics"]) {
      config.plugins.googleTagManager = {};
      config.plugins.googleTagManager.customEventsTracking = {};
      config.plugins.googleTagManager.containerId = 'GTM-57RJQ5';
              config.plugins.googleTagManager.customEventsTracking.custom = [];
                    config.plugins.googleTagManager.customEventsTracking = {
          preset: {
            coreEvents: true,
            UIEvents: false,
            playlistEvents: false,
            castEvents: false
          }
        };
          }
  



 
    // Ensure the global player registry array always exists, regardless of embed type.
    window.kalturaPlayerVideos = window.kalturaPlayerVideos || [];
    try {
              var thumbEmbedPromise = __thumbnailEmbed({config, mediaInfo: {entryId: "1_00881vdk"}});
        // __thumbnailEmbed() returns a Promise that resolves with the player instance
        // when the user clicks the thumbnail. Use .then() to capture the player directly.
        thumbEmbedPromise
          .then(function(player) {
            window.kalturaPlayerVideos.push(player);
            // Notify kaltura_datalayer.js that a new player is ready so it can
            // attach custom event listeners immediately, regardless of when
            // the user clicked the thumbnail relative to page load.
            document.dispatchEvent(new CustomEvent('kalturaPlayerReady', { detail: { player: player } }));
          })
          .catch(function(error) {
            console.error(error);
          });
          } catch (e) {
      console.error(e.message)
    }
  

 







 



###  Sound Up Video #1 

 

 

 

  
  var kPlayer = KalturaPlayer_55802022 || KalturaPlayer;
  var config = {
    targetId: "kaltura_player_6a876c680aa82705499423",
    provider: {
      widgetId: "1_85n3161m",
      partnerId: "2076321",
      uiConfId: "55802022"
    },
    playback: {
      autoplay: false,
      autopause: false,
      muted: false,
      loop: false    },
    sources: {
      options: {},
      startTime: 0
    },
    disableUserCache: "true",
    plugins: {},
    sources: {
      options: {},
      startTime: 0
    },
    ui: {
      showCCButton: false,
      settings: {
        showQualityMenu: true,
        showSpeedMenu: false      },
      components: {
        fullscreen: {
          disableDoubleClick: false
        }
      },
      uiComponents: [
        {
          presets: ['Playback', 'Live'],
          area: 'BottomBarRightControls',
          replaceComponent: 'Fullscreen',
          get: kPlayer.ui.components.Remove
        }
      ]
    }
  };

  // Check and add plugins only if they exist
  if (kPlayer.plugins["download"]) {
    config.plugins.download = {
      disable: true    };
  }

  if (kPlayer.plugins["transcript"]) {
    config.plugins["playkit-js-transcript"] = {
      position: "right", // Default: bottom;('left', 'right', 'top', 'bottom') to enable transcript.
      expandMode: "over", // Default: alongside;('alongside', 'hidden', 'over')
      expandOnFirstPlay: false,
      showTime: true,
      downloadDisabled: false,
      printDisabled: false,
      disable: true    };
  }

      if (kPlayer.plugins["preventSeek"]) {
      config.plugins.preventSeek = {
        preventSeekForward: false,
        preventSeek: false      };
    }
    config.plugins.floating = {
      disable: true    };
    if (kPlayer.plugins["navigation"]) {
      config.plugins.navigation = {
        position: "right",
        expandMode: "over",
        expandOnFirstPlay: false,
        visible: false      };
    }
    if (kPlayer.plugins["hotspots"]) {
      config.plugins['playkit-js-hotspots'] = {
        disable: true      };
    }
    if (kPlayer.plugins["moderation"]) {
      config.plugins['playkit-js-moderation'] = {
        disable: true      };
    }
    if (kPlayer.plugins["info"]) {
      config.plugins['playkit-js-info'] = {
        disable: true      };
    }
    if (kPlayer.plugins["share"]) {
      config.plugins.share = {
        disable: true      };
    }
          config.ui.uiComponents = [];
                    if (kPlayer.plugins["googleAnalytics"]) {
      config.plugins.googleTagManager = {};
      config.plugins.googleTagManager.customEventsTracking = {};
      config.plugins.googleTagManager.containerId = 'GTM-57RJQ5';
              config.plugins.googleTagManager.customEventsTracking.custom = [];
                    config.plugins.googleTagManager.customEventsTracking = {
          preset: {
            coreEvents: true,
            UIEvents: false,
            playlistEvents: false,
            castEvents: false
          }
        };
          }
  



 
    // Ensure the global player registry array always exists, regardless of embed type.
    window.kalturaPlayerVideos = window.kalturaPlayerVideos || [];
    try {
              var thumbEmbedPromise = __thumbnailEmbed({config, mediaInfo: {entryId: "1_y05dby5y"}});
        // __thumbnailEmbed() returns a Promise that resolves with the player instance
        // when the user clicks the thumbnail. Use .then() to capture the player directly.
        thumbEmbedPromise
          .then(function(player) {
            window.kalturaPlayerVideos.push(player);
            // Notify kaltura_datalayer.js that a new player is ready so it can
            // attach custom event listeners immediately, regardless of when
            // the user clicked the thumbnail relative to page load.
            document.dispatchEvent(new CustomEvent('kalturaPlayerReady', { detail: { player: player } }));
          })
          .catch(function(error) {
            console.error(error);
          });
          } catch (e) {
      console.error(e.message)
    }
  

 







 



###  Sound Up Video #2 

 

 

 

 

 

 ## All Videos



#### Sound Up Video #1

 

 



#### Sound Up Video #2

 

 

 

 









Click [here](/sites/novartis_com/files/lung-cancer-sound-up-self-advocacy-infographic.pdf "lung-cancer-sound-up-self-advocacy-infographic.pdf") to learn more about how people living with lung cancer can be empowered to advocate for themselves.

## Resources from the lung cancer community

Patient advocacy organizations around the world have information and resources to help people living with lung cancer cope with stigma and have meaningful conversations with their loved ones and health care providers.

- American Lung Association: [How Do I Talk About Lung Cancer?](https://www.lung.org/lung-health-diseases/lung-disease-lookup/lung-cancer/living-with-lung-cancer/how-to-talk-about-your-cancer)
- GO2 Foundation: [Lung Cancer Stigma: How to Cope](https://go2foundation.org/wp-content/uploads/GO2-Stigma_FINAL-1.pdf)
- LUNGevity: [What to Ask Your Doctor?](https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/what-to-ask-your-doctor)
- National Coalition for Cancer Survivorship: [Becoming a Self-Advocate](https://canceradvocacy.org/resources/publications/self-advocacy/becoming-a-self-advocate/#toggle-id-1)
- Lung Cancer Europe: [Psychological and Social Impact of Lung Cancer](https://www.lungcancereurope.eu/2020/10/15/5th-edition-of-the-luce-report/)
- Lung Cancer Research Foundation: [Living With a Diagnosis of Lung Cancer](https://www.lungcancerresearchfoundation.org/for-patients/living-with-a-diagnosis-of-lung-cancer/how-can-i-cope-with-my-lung-cancer-diagnosis/)
- Lung Cancer Foundation of America: [Hope With Answers: Living With Lung Cancer Podcast](https://lcfamerica.org/lung-cancer-info/hope-with-answers-podcast/)



 



 

 

 

 

*The organizations and websites listed above are independently operated and not managed by Novartis Pharmaceuticals Corporation. Novartis assumes no responsibility for any information they may provide.*