Small Cell, Big Impact: New Virtual Small Cell Lung Cancer Group Kicks Off (Part 1)
Last updated: June 2022
The Dusty Joy Foundation, a 501(c)(3) nonprofit serving the lung cancer community, has a growing network of monthly educational patient group meetings. One brand-new group that I am especially excited about is our Small Cell Lung Cancer (SCLC) group.
People with SCLC face different challenges
People with Small Cell Lung Cancer face unique challenges. For starters, Small Cell is uncommon, comprising approximately 15 percent of lung cancer patients. Treatment is quite different from Non-Small Cell. Small Cell is usually fast-growing and has a significantly lower survival rate than Non-Small Cell.
Plus, Small Cell does not have targeted therapies, like Non-Small Cell. In the Non-Small Cell community, patients have organized around their biomarkers. These biomarker groups help educate and empower patients, which of course are excellent reasons for joining others on a similar lung cancer journey. However, an unintended consequence of patient biomarker groups is that people with no biomarkers are excluded. (Researchers are studying biomarkers in SCLC, but it may be years before we see progress here.)
Building a space for SCLC patients
It was during one of our LiveLung meetings that a longtime group member with Small Cell made the comment that she felt as if she didn’t have anything in common with the other lung cancer patients who were discussing their various biomarkers and targeted therapies.
When I was first diagnosed with lung cancer, the lung cancer advocacy community was unified. We all had one thing in common: lung cancer. It didn’t matter if someone had Small Cell or NSCLC if they were young or old, male or female. It didn’t make a difference whether someone had one biomarker or another. (Actually, biomarker testing was not even the standard of care back then. We didn’t even know what our biomarkers were.)
Although I had long recognized the unmet need of the Small Cell Lung Cancer community, I wasn’t sure what to do about it or how to help. But after my friend shared that she felt as if she did not have anything in common with the other survivors, I knew we needed to start a Small Cell Lung Cancer group.
What to expect for SCLC group meetings
We received a grant from the Lung Ambition Alliance, a global coalition - comprising AstraZeneca, Global Lung Cancer Coalition, Guardant Health, and the International Association for the Study of Lung Cancer - to start the virtual Small Cell group.
Our monthly meetings will feature expert speakers and will be videotaped and shared on the LiveLung YouTube channel. We provide meal gift cards to Small Cell patients attending the monthly meetings. We also provide a Hope Tote to our Small Cell patients.
The purpose of these monthly meetings is to provide an underserved lung cancer population with their own dedicated group where they will receive education, support, fellowship, and hope. These meetings will feature expert speakers focused on the SCLC community, as well as speakers addressing more general issues, such as nutrition and exercise.
We are working with nurse navigators at dozens of cancer centers to help reach patients with Small Cell Lung Cancer. If you or someone you know has Small Cell lung cancer, please share this information with them. Caregivers also are welcome in the group. Our SCLC group leader is Montessa Lee, long-term Small Cell Lung Cancer survivor. Pamela Bono and Debbie Cox, also long-term survivors, will provide additional support for the group. All three of these leaders are longtime friends of mine. I am grateful for their support with this program. Part II gives an introduction to our team leaders, Montessa, Pam, and Debbie.
The new virtual Small Cell group kicks off at 6:30 pm ET, June 21, 2022. (RSVP at LiveLung to join the group.)
Happy Lung Cancer Awareness Month! What does self-advocacy mean to you?