Advocates Engage, Learn at Scientific Conference
Last updated: October 2020
Lung cancer advocates are becoming more informed about and engaged with the research community. Several advocates were first-time attendees at the International Association for the Study of Lung Cancer’s Targeted Therapies in Lung Cancer conference held earlier this year in Santa Monica, California. For some, it was their first scientific conference. Below are their comments about that experience.
Debbie's first time at this type of conference
“This was my first time going to this type of conference,” said Debbie Pickworth of Garden City, Michigan. “It was a lot of information all at once. But I was very happy to see all the research being done in lung cancer.”
Even though it was “information overload,” Debbie said she was happy about the opportunity to attend and excited about all the science happening with lung cancer.
“I am glad we had access to the slides after the event. If I needed to learn more about a presentation, I could do so at a later time and take notes for conversations with my doctors.”
Learning about other cancer mutations
Debbie leads a monthly lung cancer patient group, as well as a biomarker group.
“I am particularly interested in the BRAF V600e mutation,” she said. “I run the BRAF Bombers group for this mutation. I also run a few support groups, so am interested in other mutations and learning about them so I can help someone else in their cancer journey.”
Becoming a virtual advocate
Following the conference, the pandemic disrupted Debbie’s group meetups, but she found ways to share the information.
“With Zoom and email, I was able to pass some information on to people in need,” Debbie said. “I am hoping when this pandemic is over, things will get back to some kind of normal. I look forward to having more discussions in person about treatments. But that hasn’t stopped me from sharing information, though. It just changed the way I pass it on.”
“I believe as an advocate who is trying to help as many patients as possible,” said Debbie, “it is important to learn as much as possible -- not only for myself as a lung cancer patient -- but also as an advocate. Information is power.”
Diving into KRAS research and information
Another advocate, Terri Conneran of Charlotte, North Carolina, recently learned she has the KRAS biomarker. Since then, she founded the KRAS Kickers group.
“IASLC’s Targeted Therapies conference was my first scientific conference,” said Terri “KRAS is a target, though it lacks specific therapy today, it gave me confidence to hear of the research for one tomorrow. I hope I will be there for it.
“I appreciated observing the interaction among doctors in respectful debates. This gave me more confidence in decisions and choices presented to me as a patient. It demonstrated that requesting a second opinion from my doctor is completely appropriate and should not threatening.
We are in this together
“The excitement at the conference highlighted the importance of a team approach to finding therapies. Hearing about the research, learning about the importance of communication among doctors, patients and clinicians demonstrated that as a patient there is a team working to bring a treatment to each of us. I am not alone; we are in this together searching for treatments.
“IASLC underscored the importance of having a lung cancer specialist to achieve the best results.”
Read the continuation in Advocates Engage, Learn at Scientific Conference (Part 2).
Happy Lung Cancer Awareness Month! What does self-advocacy mean to you?