Advocating for Biomarker Testing During a Lung Cancer Diagnosis
As a part of its Speaking Out Video series, CURE® spoke with Terri Conneran, on behalf of KRAS Kickers, about what biomarker testing is and why patients with lung cancer should advocate for themselves during that process.
Transcription:
Colleen Moretti: What is biomarker testing? What does it tell patients and physicians about their lung cancer?
Terri Conneran: Biomarker testing is really what is driving the cancer. It’s something that the doctors can do is a diagnostic through their pathology to find out what is behind the cancer that's making it grow, so they can identify what needs to be targeted. Sometimes that target doesn't have something that's actionable, doesn't have like a specific drug, but it does tell the doctor what you may not respond to which is just as important information.
Moretti: Where does a patient find their biomarker test results? And what do they do with them?
Conneran: Well, first the doctor needs to do the testing. And it's very difficult as a patient to hear from a doctor “Well, we need to wait for this report.” So if you're first diagnosed with cancer because biomarker testing isn't just in lung cancer, it's very important lung cancer is very important in other cancers as well. But that first step is the doctor needs to do the test, they take your pathology, they take your tissue, and they send it off for that testing. It can take around two weeks even to get a full comprehensive panel and it’s from that full comprehensive panel that they make those decisions.
That two weeks I'm not gonna lie It's really hard to wait. And a lot of times their patient is being put into the situation where the doctor is saying, “Well, do you want to start a treatment or do you want to wait for these results?” Wait for the results. The same way that I don't drive blindfolded — you need to know what's driving that cancer. I'm talking about the average patient that has just got diagnosed, and they're like, do you want to wait, do you not want to wait? You don't have to start with something, you need to begin with that testing. And you need to ask for it, lot of physicians don't do it automatically. The big centers do, the big cancer centers do, the big specialists do. But if you're at a different setting, oftentimes they're leaving it to you to decide. And they may say something along the lines of all your insurance may not cover this — they don't know that we haven't asked. Most biomarker testing will be covered particularly for stage three, stage four.
Moretti: Once results come in, how does a patient debrief them? What should they be looking for?
Conneran: Well first you need to start with the information, start with that piece. Get a copy of the lab report and from the lab report is going to give you the information that you're going to need to be asking about. It will give different percentages, it will give different types of biomarkers, for example, it'll give KRAS or EGFR, it may say ALK. It may say a lot of different things. It may show positive or negative, but from that initial report, is gonna feel confusing, it's gonna feel overwhelming. Look at the summary page, look at who did who did the testing. All the places have someone that you can reach out to, and they can go into grand detail. But your doctor is going to be the person is going to look at and say “Okay, based on the fact that you have KRASG12C, or you have an EGFR Exon19 or what have you, we're going to be going down this path, qe're gonna be looking at these treatments.” And that's where the decisions come from.
Moretti: How do patients advocate for themselves before, during and after biomarker testing?
Conneran: The hardest part I think as a patient is the sitting and waiting. Being patient as a patient is brutally difficult, but it's necessary. And if they're saying we're going to wait for the two weeks to get the testing results back, that’s the time you can do the analysis. That's the time you can kind of start getting involved in finding out what are the different options. And it'sa space that as a patient, when I was going through it I didn't realize what a blessing it was to have this time to process it, because it's all very overwhelming and you're very impatient to get started on treatment. But you can get the knowledge that you have.
What are the basic biomarkers in lung cancer, well the biggest the biggest one is KRAS — the KRAS Kickers are here for you. We're happy to give you information around that. The EGFR is this next largest group in lung cancer. Then there's the smaller groups and you can start getting a lay of the land of what to expect. It doesn't change if you're hoping I do or don't have this because it's just going to be what it is. So, it's not like oh, please let me have or please don't let me have it doesn't really matter. It's just going to be an assessment and kind of get a lay of the land. When I was going through the patient part of it this the sickest part of my journey. That was the time that my family came around, and they were getting educated. They were learning what they needed to know. So, they knew what to do next and so it wasn't so frightening.
Moretti: After the biomarker testing results have come in, what kind of plan should patients come up with? Who should be involved?
Conneran: It's about everybody joining together to get that connection. And a lot of that is that knowledge, that knowledge is what helps the doctors, and the patients get on board to change what you can. That's coming from the research and as we learn to advocate for ourselves. You'll notice I did the KRAS — knowledge, research, advocacy and survivorship. That's how the KRAS Kickers roll and that's what we do as far as within the community. The patients can connect through our Facebook forums. We have ongoing webinars for specific information, but they mostly want to be able to connect and see somebody else who has something most similar to them. I want to see somebody that also has KRASG12D, I want to know what that means. And I want to see somebody on the other segment treatment. I want to see somebody on the other side of the radiation or on chemo and hear what their real-life experience was. And that's how we help because we know that sharing hope multiplies it and that's what we want to do. As we work together to kick cancers KRAS.
This transcription has been edited for clarity.
