Lisa Goldman: Hi. Welcome to Patient Power. My name is Lisa Goldman. I'm a lung cancer patient. I was diagnosed in 2014 with ROS1-positive non-small cell lung cancer. And I'm here with Dr. David Carbone, a lung cancer specialist. We're here to talk about getting a diagnosis for non-small cell lung cancer. So, welcome Dr. Carbone. Thanks for helping us out with some of these questions. I know when I was first diagnosed, the only symptom that brought me to the doctor was coughing. I just had a pesky cough that wouldn't go away. And so, I finally kept pursuing it and eventually wound up with a diagnosis. Can you talk about what other symptoms people might have on their radar that might bring them to the doctor for a diagnosis?
Dr. Carbone: Well, that's a big problem with the diagnosis of lung cancer, Lisa, because the lungs themselves don't really have nerve endings and you can have quite a large tumor in your lung, even grapefruit size, with no symptoms at all. If you had such a tumor in your skin or in your breast, you'd probably notice it. But the symptoms like you described really are when the tumor irritates an airway in your lung and that triggers a coughing reflex, but unfortunately most lung cancers today are diagnosed because of symptoms from metastases. If the cancer spreads from the lung to a bone or your brain, you get symptoms that are from the metastasis. And obviously it'd be better to diagnose it early, and that's the purpose of CT screening, but some people also have a little bit of coughing up blood with the cough and that's certainly something to be worried about. Chest pain that doesn't go away is something to be concerned about, but it is a problem that lung cancer symptoms are not very specific for lung cancer.
What Are the Early Symptoms of Lung Cancer?
Lisa Goldman: Yeah, I've heard that over and over again from fellow patients. Sometimes people report maybe shortness of breath, or I've heard shoulder pain too, and back pain, but they're kind of hard to identify really.
Dr. Carbone: And often those two are symptoms of relatively advanced lung cancer where the tumor is eroding into the chest wall or there's a pleural effusion caused by the cancer.
Lisa Goldman: Right. So unfortunately, that probably means my next question was when or how is lung cancer usually discovered if there aren't many symptoms to keep an eye on? Can you discuss that a little bit?
Dr. Carbone: Well, there is an increasing effort to do CT screening in smokers, and that does result in the diagnosis of lung cancer in early stages, but individuals like yourself with driver mutation positive lung cancer usually aren't eligible for CT screening. And so, as I said, most lung cancers are diagnosed because of some sort of symptom. And most, more than half, of lung cancers are diagnosed when they're not resectable surgically, unfortunately. People are working on blood tests and other ways of detecting lung cancer independent of smoker status, but those are still in the works.
Lisa Goldman: Got it. So, when I was diagnosed, there was this mouthful of words that I didn't really understand. Adenocarcinoma and non-small cell, can you tell people a little bit, what does it mean, non-small cell lung cancer?
What Is Non-Small Cell Lung Cancer (NSCLC)?
Dr. Carbone: So, lung cancer is complicated and really, it's gotten more and more complicated in recent years. But basically, decades ago, it was divided into two main types very simplistically called small cell and non-small cell because, guess what, the cells are small or not small under a microscope. And this is kind of a really dumb classification, but it is useful in terms of therapy because it does reflect two quite different types of tumors that are treated pretty differently. The most common type of lung cancer is non-small cell lung cancer.
Small cell is decreasing in frequency. It's associated with very heavy smoking. Smoking is fortunately going down in the United States and most cancers are of the non-small cell type. The most common non-small cell type is called adenocarcinoma, and that just derives from the way it looks under a microscope, that it forms glands and has certain protein expression that you can detect in the pathology laboratory. The other type is squamous, that's the other big non-small cell type. And that is also decreasing in frequency and is uncommon in parts of the country. So really, the majority of lung cancers are this non-small cell adenocarcinoma tumors, but that doesn't tell you the whole story about the cancer or really accurately guide treatment. Does it?
Lisa Goldman: No, it doesn't. But before I get to the testing, I just wanted to ask one other question which is, you mentioned, and this happened to me, I was diagnosed when I was advanced. Can you tell people what advanced means?
What Does it Mean if Your Lung Cancer Is Advanced?
Dr. Carbone: Well, basically there's a couple of questions you ask when you have cancer. First of all, is it cancer? What kind of cancer is it? And then where the cancer is. The where part is the advanced or not advanced. Lung cancers can be present as tiny tumors that are just in the lung. That's what's called an early tumor. Cancers are often described as being staged, and usually a stage one, two, three or four. That solitary lump in the lung is called a stage one. If you have a spread to a lymph node that's nearby it could be a stage two. That's still considered localized lung cancer and still the standard treatment would be surgical removal.
But once it's spread to lymph nodes in the center of the chest or spread outside the chest to bones or brain or fluid around the lung or the liver, then that's called stage four or advanced. So generally, stages one and two are considered local. Stage three is considered locally advanced, and stage four is advanced or metastatic. And those are general ways of looking at the disease, though as with anything in biology and medicine, there are exceptions, and there are sometimes stage four cancers that are surgically resectable and stage ones that are not, for example.
Lisa Goldman: Got it. Thank you. So, getting back to the testing, so once you hear that you may have cancer, what kind of tests should be done to make sure that you get a complete diagnosis and picture of what's going on?
What Tests Should Be Done to Ensure an Accurate Diagnosis?
Dr. Carbone: Well, we have to know the anatomic stuff, where the cancer is that we just discussed, and often that's determined by a PET scan and a brain MRI. And that really shows unsuspected deposits of cancer in other places in the body. But once you know where the cancer is, in the last 20 years we've really learned that the treatment for lung cancer is very dependent not just on the way it looks under a microscope or where it is in your body, but on very specific genetic and molecular features that the cancer has. I've been practicing on cancer, or oncology, for 35 years now, and when I started really everybody was treated the same and most people didn't get treatment at all because we had very ineffective chemotherapies. But now, there's eight or 10 different genetic abnormalities that have specific therapies that can dramatically impact the cancer with these genetically targeted therapies.
You can take people that have widespread cancer, are near death, they're desperately short of breath, and with an oral medication bring them back to a normal quality of life with very few side effects. And you could never do this in the old days of chemotherapy. And it's not just by accident. This kind of matching of the therapy to the tumor only happens if you perform the appropriate biomarker testing on the tumor, which unfortunately sometimes takes a couple of weeks. And beyond that, the newest treatment modality for lung cancer is immunotherapy, and there are other markers that help guide the use of immunotherapy in cancers. And both of those advances have really led to a doubling of five-year survival in people with even advanced lung cancers. We almost never saw anyone live two years. Now, we see many people. I just saw a guy in my clinic that's nine years out from his diagnosis with advanced lung cancer and doing well.
Lisa Goldman: Yeah, I mean, here I am.
Dr. Carbone: I don't know, how far out are you, Lisa?
Lisa Goldman: I'm about seven and a half years out.
Dr. Carbone: And nobody can even tell by looking at you that you had anything wrong, and that's entirely because of the molecular testing and the targeted therapy that you're taking.
Lisa Goldman: Yeah, absolutely. When I was first diagnosed, I was on oxygen and so it was quite obvious walking down the street toting an oxygen tank and now I'm exercising every day. And it's amazing. So, these tests, when you go to the doctor, will they automatically do them or are they something a patient needs to request from their oncologist?
What Is the Patient’s Role in Achieving the Best of Care for Lung Cancer?
Dr. Carbone: There's nothing automatic in life. You always have to, as you say, as people say, be your own advocate and make sure that things are done properly. If you take your car in for a repair, you want to make sure that they accurately diagnose your car and sometimes they don't. And it's the same thing times a hundred with medical therapy for lung cancer. All of these genetic tests and biomarker tests are fairly new and fairly complicated. Not every physician has a PhD in genetics like I do and understands the implications of these abnormalities. First of all, they're not common. I mean, a ROS mutation may be in one or two percent of lung cancers. So, an average practicing physician may see one or two in a decade. And so, they may not think about ordering the right tests.
And so, it's best for patients to be empowered, so to speak, and ask questions, learn about the appropriate testing, and ask. And if the appropriate testing wasn't done, then ask why not. It's never a problem to get a second opinion at a major academic center either. I find often that community physicians have heard about biomarkers, maybe they order a couple of biomarkers. Also, this week in clinic I had a never-smoker, a man with metastatic lung cancer who had only three markers done. And I said that's not enough. I don't want to start therapy just arbitrarily without doing a complete panel, and we found a driver on him by a more complete analysis. And I was his second opinion. So, I think ideally, patients should educate themselves to the best of their knowledge and make sure they get optimal testing for these markers. They [do] not present in everybody, but it really is a shame to miss one of these actionable markers because it transforms the type and the quality of therapy that you receive.
And often, even if we see a second opinion, we can make a recommendation to a local doctor, and they can be treated appropriately in the community. So, I don't think it's a bad idea. I do think it's a good idea if you're going to get a second opinion to do it before you start therapy, because sometimes we get people who've been given one dose of chemotherapy and then we find out they have an out fusion or something that really changes totally the type of therapy that would be ideal for them.
Lisa Goldman: Do you have any other recommendations for somebody that's newly diagnosed or suspicious and having symptoms they're concerned about?
What Else Should Newly Diagnosed Lung Cancer Patients Know?
Dr. Carbone: I think it's important for patients to try their best to understand what's going on and to educate themselves as best they can. Patients in general aren't trained physicians. I'm a cancer survivor myself. I was treating cancer patients when I was diagnosed, so I had the advantage of knowing the vocabulary and knowing the science, but that's generally not true. And so, it's impossible for them to be completely knowledgeable about everything but talking to patient advocacy groups and listening to information that's readily available from reputable sources, such as Patient Power or other lung cancer advocacy groups, really helps patients be able to take control of their own therapy. And groups, it's been very gratifying to see that certain of these rare molecular subgroups where a doctor may only see one or two, these people with these tumors self-assemble and form groups that pass around the latest information.
And sometimes I find that a patient will come in and heard on their forum about this new presentation by Ross Camidge or somebody from Dana-Farber or wherever, about a new treatment that I hadn't heard of, and that's because it was just presented yesterday at some local meeting. So, if you have one of these driver abnormalities, seeking out your driver internet group, like the Ross-Wonders for example, or the EGFR Resisters, or there's various groups like that. So, finding other patients with lung cancer, finding support groups and online information, but from reputable sources. I mean, there's a lot of, as they call it, misinformation, available now online and making sure you vet this information by [a] knowledgeable physician is super important.
Lisa Goldman: Agreed. All right. Thank you so much. It's been very helpful and thank you to Patient Power for helping get this information out to the public.
Dr. Carbone: Thank you, Lisa. You're looking good after seven and a half years from your diagnosis.
Lisa Goldman: Thanks.
