Presenting at ASCO (American Society of Clinical Oncology)

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:

ModeratorLyudmila Bazhenova
An International Academic Oncologist PerspectivePilar Garrido
North American/Community Oncology PerspectiveMakenzi Evangelist
A Patient PerspectiveJill Hamer-Wilson
A Radiation Oncologist PerspectiveMatthias 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!

#hope

#pathways for advocacy

#strategic

Lung Cancer Screening Matters!

The International Association for the Study of Lung Cancer holds the World Conference on Lung Cancer every year. This beautiful picture was taken at WCLC19 in Barcelona. COVID has not stopped lung cancer research, but due to COVID-19 WCLC20 has been happening this month, virtually rather than in Singapore. I’m going to briefly summarize two key presentations below. (After I tell you about these amazing smiling people below)

#WCLC19 Barcelona

I love looking at these amazing advocates from several continents, gathered in Barcelona in September 2019 to learn and celebrate research. We know that research means life, and lung cancer research is extending many of our lives. Many of us are now taking treatments that did not exist when we were diagnosed. Some of us are holding onto hope for new research to come up with an effective new treatment to help keep us alive before our current treatment stops working.

At the time of that photo, nine of us were on treatment (later stage diagnosis), two diagnosed early stage (had curative treatment), three never diagnosed, and all fourteen fierce lung cancer advocates. I’m grateful that though some of us have gone through very bumpy paths, all are still alive. How happy we are that we were well enough to travel to Barcelona and be physically present together with top researchers in the world, learning the newest potentially life-extending news!

For people affected by lung cancer, research often means the difference between life and death. For those of us who know many people affected by lung cancer, losing people we care about is far too common. Most of us are diagnosed at a later stage with a very poor prognosis. If more people were diagnosed at an earlier stage, way more would live much longer.

Let me get to a quick summary of the research!

First, experts are saying we can double lung cancer survival in four years! Sounds great, and it’s not complicated. We need to educate doctors and implement lung cancer screening programs. Here’s the beginning of the article from IASLC Lung Cancer News. You can read the whole thing at this link: https://www.iaslc.org/iaslc-news/ilcn/improved-screening-uptake-could-help-double-lung-cancer-survival-2025, but the basic summary is that more doctors need to know that lung cancer screening works.

Lung cancer screening works, and more doctors need to know it.

When we test people using low-dose CT scans, way more will be cured. Lung cancer screening has the power to shift the stage when the majority of people tend to be diagnosed from late stage to early stage, which makes a huge difference for survival. In very broad strokes, when we don’t screen, about 3/4 of the people will be diagnosed later stage (with very poor prognosis). When we screen, about 3/4 of the people who are diagnosed will be early stage with a very good chance of living long and not dying of lung cancer.

Lung cancer screening makes sense!

Second, a new study from Taiwan (“TALENT”) shows the importance of lung cancer screening for ALL high risk individuals. Most screening is done for people with a long history of heavy smoking. These researchers from Taiwan did lung cancer screening for people who had never smoked but were at high risk from other things like family history or cooking without ventilation. They found lung cancer in a larger percentage of people than is typically found in a screening study with heavy smokers. This “TALENT” study found lung cancer earlier and people will live much longer because of that.

If you’re interested, you can read the article here: https://www.iaslc.org/iaslc-news/ilcn/lung-cancer-screening-never-smokers-east-asia-catches-very-early-stage-disease.

Screenshot of my Tweet

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Lung cancer screening matters for all people at high risk, not just smokers. Anyone can get lung cancer.

Anyone. People who eat broccoli and blueberries. Triathletes, daughters, sons, sisters, brothers, moms, dads, friends. Lawyers, nurses, teachers, receptionists, reporters, pharmaceutical reps, professors, personal trainers, doctors, administrators, health educators, financial experts, engineers, ministers, vice principals, social workers, writers, rocket scientists…

Maybe even you, dear reader.

I definitely don’t want anyone to get lung cancer, but if you’re going to be diagnosed, an early stage diagnosis is a way better diagnosis than a later one.

Lung cancer screening can mean the difference between late or early stage, a poor prognosis or a cure.

Early detection matters! Let’s catch it early!

Lung Cancer Screening matters – for all people at high risk!

Tell your doctor. Tell a politician. Get a white ribbon and tell the world.

Let’s act now!

Awesome Ottawa lung cancer survivor advocates Andrea Redway (lawyer), Kim MacIntosh (nurse) and me.
All diagnosed later stage, all very grateful for life-extending lung cancer research.