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.
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
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
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
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.
Click here 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?
- GO2 Foundation: Lung Cancer Stigma: How to Cope
- LUNGevity: What to Ask Your Doctor?
- National Coalition for Cancer Survivorship: Becoming a Self-Advocate
- Lung Cancer Europe: Psychological and Social Impact of Lung Cancer
- Lung Cancer Research Foundation: Living With a Diagnosis of Lung Cancer
- Lung Cancer Foundation of America: Hope With Answers: Living With Lung Cancer 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.
- World Health Organization. Cancer. https://www.who.int/news-room/fact-sheets/detail/cancer. Accessed September 17, 2021.
- Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. BMJ. 2004;328(7454):1470. doi:10.1136/bmj.38111.639734.7C.
- Cataldo JK, Jahan TM, Pongquan VL. Lung cancer stigma, depression, and quality of life among ever and never smokers. Eur J Oncol Nurs. 2012;16(3):264-269. doi:10.1016/j.ejon.2011.06.008.
- Hamman H et al. Development and preliminary psychometric evaluation of a patient-reported outcome measure for lung cancer stigma: the Lung Cancer Stigma Inventory (LCSI). Stigma Health. 2018;3(3):195-203. doi:10.1037/sah0000089.
- Carter-Harris L. Lung cancer stigma as a barrier to medical help-seeking behavior: practice implications. J Am Assoc Nurse Pract. 2015;27(5):240-245. doi:10.1002/2327-6924.12227.
- National Coalition for Cancer Survivorship. Self-advocacy: a cancer survivor’s handbook. 2009. https://canceradvocacy.org/wp-content/uploads/Self_Advocacy.pdf. Accessed September 24, 2021.
- Hagan T, Rosenzweig M, Zorn K, et al. Perspectives on self-advocacy: comparing perceived uses, benefits, and drawbacks among survivors and providers. Oncol Nurs Forum. 2017;44(1):52-59.
This is page was updated on Nov 05, 2021