Authors: Amy Kampschroeder MA, OTR/L, CHES, Manager, Patient Outreach and Special Initiatives and Daniel A. Saez, MSc, Manager, LungMATCH Navigation Program
In 2021, one of GO2 for Lung Cancer’s priorities continued to be bringing lung cancer education and empowerment to patients to help ensure equitable healthcare. One of the tools GO2 for Lung Cancer used and continues to implement is the Small Cell Lung Cancer (SCLC) Initiative in which the overarching objective is to educate, support, and engage those affected by SCLC in an ongoing and consistent manner, and to bridge gaps in care and meet needs through outreach and authentic listening, expanding resources, and building community.
SCLC Initiative Primary Goals
Amy Kampschroeder, MA, OTR/L, CHES
To understand the unique needs of patients and caregivers affected by SCLC, we have started with direct outreach to SCLC patients: listening to their stories, what they would like others to know, and gaps in care. We have also begun directing patients to our services with the intent of publishing patient stories and perspectives as a response to the theme that survivors want others to know there is hope, they are not alone, to find support in connecting with others, and to know that positivity and a sense of humor are key to living well with SCLC. Additionally, we have sought out input on the needs faced by those affected by SCLC through different channels including social media, focus groups, workshops, anonymous surveys, and individual interviews. Into 2022, our organization will expand on the needs assessment portion of the initiative by hearing from social workers, nurses, and other clinicians who help those affected by SCLC. By hearing from these populations, we will be able to better tailor the education provided to patients, caregivers, and others to be more appropriate and sensitive to the needs of the SCLC community.
Daniel Saez, MSc
Through the SCLC Initiative, we have succeeded in developing and disseminating SCLC specific educational materials and referral services addressing unique needs as facilitated by a unique and dedicated SCLC landing page, informational one pagers, a set of comprehensive booklets, one-on-one mentorship through the Phone Buddy Program, and the continuation of our educational Living Room series. In the coming year, the GO2 for Lung Cancer team will double down on these efforts by creating new materials addressing SCLC needs for clinical trials and palliative care. We will also launch a new online community specially for those diagnosed with SCLC, begin the Gathering HOPE monthly social hour by offering a breakout room for those affected by SCLC, and regularly feature the voices for the SCLC community on our social media channels and website.
Im not trying to be negative but the fact that there’s nearly no small cell lung cancer Stories clinical trials,reports etc. On your website it’s not very helpful to people who have small cell lung cancer and I’m not trying to be ugly but the fact that you can read stories about non small cell lung cancer survivors and good outcomes with years of survival and then find out that they have nsclc they don’t because the staging confusion That happens on most of the lung cancer websites and the other things that lead you to believe that what you’re reading about is small cell when actually you’re reading about non small cell
which leaves me very saddened and i hate to say a little jealous of how great they’re life is going but I have no positive prognosis in my future except death Because once it was determined mine had metastasized I felt like the doctors pretty much gave up on me. I like reading the positive stories but then I find that later they have Non small cell And I’m like this didn’t even help me this is made even sadder.
Hi, Mary. Thank you for your feedback. Through the Small Cell Lung Cancer Initiative, we are working on promoting more small cell lung cancer stories and materials. We wish you luck in your lung cancer journey, and we’ll be thinking of you during this difficult time.
I would have to agree with Mary. Once diagnosed with small cell it was like I was dead already. There are many more treatment options than there were in the past but these treatment options are quite painful, often don’t work and doctors are not forthcoming with prognosis, so we cannot plan our lives properly. What bothered me was I knew that I had mutated into small cell in the summertime and the doctor called it a, “bad clone.” Because it was way too early for me to be mutating into small cell then three months later I’m in the hospital lung collapsing with small cell cancer. I should have gotten more than a blood biopsy. And this is from one of the most prestigious cancer hospitals in the country. There has got to be better data for our cases I could’ve been diagnosed much sooner. Anyway Mary we have to be brave together hopefully they will come up with a solution but we will be on our cosmic journey before then. Please continue to hound people for research money and collect as much data as you can.
We are thinking of you during this difficult time. If you have any questions or concerns, please reach out to our HelpLine at 1-800-298-2436 or support@go2.org. We wish you luck in your lung cancer journey.