Shared insight on how molecular profiling can impact the management of EGFR exon 20 insertion–positive NSCLC and how patient advocacy groups can help patients to interpret test results.
Estelamari Rodriguez, M.D., MPH: The other thing I wanted to highlight is that in the past, EGFR mutations were first described in women who were non-smokers and Asian women. I still feel there’s a big bias from physicians who take care of patients with cancer, that if they see patients who are heavy smokers or patients who are older, they may not think of these mutations because they’re attributing them to younger patients. I don’t know the age of your husband when he was diagnosed, but I have seen in my practice patients of all ages who present with this diagnosis. To me, the only indication for testing is the diagnosis of lung cancer, not how the patient looks or where the patient comes from, because the smoking history doesn’t really determine how these mutations present.
Katina Bland: Absolutely. You’re 100% correct. My husband was 48 years young when he was diagnosed. He was an extremely healthy and fit man; he is an athlete. He was a coach, and just very fit and very careful about what he ate, and maintaining a healthy lifestyle, and he never smoked. There was no reason to indicate that not only would he have potentially cancer, but lung cancer. It was really shocking for us to learn that. There are quite a few other patients who are to this day at this time undiagnosed, or even in some cases misdiagnosed because they don’t know what to look for and potentially use the wrong testing to identify exactly what kind of cancer they have. At Exon 20 Group, we try to help patients with that by advocating for them. We get quite a few questions that we field on a regular basis, either calls that we get or emails, regarding if these patients have received the right or the best testing. It’s an overwhelming majority of patients we’ve found who had their tissue tested by NGS [next-generation sequencing] laboratories, which is the right direction they want to be going. You mentioned the Guardant360 test, NeoGenomics, Foundation Medicine, Caris, Tempus—those are several of the laboratories that are doing the correct and accurate testing to get these patients the appropriate sequencing they need to understand, so that they can be successful in battling their cancer.
Estelamari Rodriguez, M.D., MPH:Thank you. I have to say that the role that you play, the patient advocacy groups in education, is critical because I see patients who, when we give them this diagnosis of cancer, go blank. I feel that it’s a lot of information, and to try to explain genetic sequencing at that stage and retain all that information is overwhelming. I think patients are feeling sick and have an urgency to start treatment. I think that’s when caregivers are critical to the team because they may have the resources and the time to seek out this information. I’m very excited to hear about the resources that the organization has. I wanted to ask you what kind of challenges you have seen patients report in terms of the testing when they come and ask questions. What kind of challenges have patients described?
Katina Bland: Well, there are a number of challenges. Sometimes they start right at the basic level of, “We can’t understand this testing report. Can you decode it for us? Can you help us understand what this means?” Sometimes that can mean helping the patient to understand a little better the terminology, I suppose just the vernacular in this world that we live in, in fighting cancer. Sometimes it can mean coming alongside the clinician and discussing not necessarily how to read the report, but some ideas and approaches, best practices and standards, making sure they’re aware of clinical trials, making sure that they’re aware of the new drugs that have been approved, and different options that their patients have available to them that they may or may not be aware of.
Estelamari Rodriguez, M.D., MPH: I think that is critical. We need to engage patient advocates, we need to engage caregivers so that we give patients the best tools, and also so that patients can become their own self-advocates. Patients present with symptoms, and we have chemotherapy, and we have immunotherapy, and we know that we can do a disservice to a patient who would do better with a different treatment if we don’t look for them. This has been looked at. We always think as doctors, we’re all doing the right thing, but in the last oncology conference, they presented data from the whole country and community practices and academic centers. Only about half of the patients who start their first treatment for advanced lung cancer have the genetic information at hand when that treatment started. There’s a significant number of patients who may be started on chemotherapy or immunotherapy, and they have molecular drivers that will do better with a targeted therapy. One thing that we’ll talk about is that these treatments, in a way, are different than chemotherapy and immunotherapy. In some ways, they can keep your quality of life longer and they can be easier to tolerate in some ways.
Transcript edited for clarity.