Presenting at ASCO, the world’s largest cancer conference, was a great opportunity to strategically represent lung cancer survivors and cancer survivors worldwide.
It was a terrific experience, so good to work with awesome co-presenters and bring significant contributions along with them on our panel discussion:
Where Do You Go When You Put Your Best Foot Forward? Challenges After Upfront Use of Next-Generation TKIs in Driver-Mutated NSCLC. We gave a 60 minute panel session during which we discussed cases in an interactive manner with the audience. Here is the multi-disciplinary team:
|An International Academic Oncologist Perspective||Pilar Garrido|
|North American/Community Oncology Perspective||Makenzi Evangelist|
|A Patient Perspective||Jill Hamer-Wilson|
|A Radiation Oncologist Perspective||Matthias Guckenberger|
As far as we know, only two lung cancer survivor advocates presented at ASCO, and this is the first panel discussion with a patient/survivor/caregiver advocate. Here is a tweet from our moderator:
I echo our moderator’s Tweet: Great job, ASCO! Thank you for including this survivor advocate as a co-presenter at #ASCO22! May there be many more of us to follow! Well done, team! Thank you for caring about your patients. A real pleasure to present with you. An extra big thanks to ASCO for changing things up to including me in an online format when health would not allow me to present in person. This shows that ASCO values the survivor voice. #grateful
Here are some of the things we spoke on … biopsies, holding targeted therapy during radiation, questions about increased toxicity with potentially no clear benefit, different kinds of lung cancer like ALK, EGFR, EGFR C797S …
Before the presentation, I reached out to some people affected by lung cancer from here in Canada as well as the United States and around the world to bring their input into the presentation, to be able to represent them as best as possible. They brought a lot of good input, and the time was definitely too short to say it all. Here are a few of the things I said …
Each patient is unique, and every patient-doctor relationship is unique. I urged oncologists to not make assumptions (e.g. that we can’t afford it), but instead to ask questions, discuss options with us. Please inform us of the pro’s and con’s. Empower us to make good decisions with you. And always be empathetic, because getting a lung cancer diagnosis can be traumatic.
Here is the link if you’re interested: https://meetings.asco.org/2022-asco-annual-meeting/14236?presentation=205915#205915https://meetings.asco.org/2022-asco-annual-meeting/14236?presentation=205915#205915 You may need to sign in, and I think it’s free for survivor advocates but I’m not sure about others. You may have to ask the good folks at ASCO and I’m sure they’ll help you out.
A number of cancer researchers and organizations are working on figuring out how to engage with people affected by cancer. Some are effectively including patients/survivors/caregivers at the table. This is best practices.
Many of our advocacy efforts have been about strategically creating pathways to make it easier for others to also do advocacy. Two lung cancer survivor advocates presenting at ASCO this year? Let’s work for many more in years to come!
#pathways for advocacy