Lung Cancer: Why One of The Most Common Cancers is Also The Most Stigmatized

Dr. Diane Reidy-Lagunes:

Fact: Anyone can get lung cancer, whether you've smoked or not. Yes, that means if you have lungs, you can get lung cancer. It is the number one cancer killer of both men and women, and kills more women than breast, ovarian, and cervical cancers combined. And yet it raises half the fundraising of breast cancer. Translation: Death rate is high and fundraising is shockingly low. Long-term messaging about how smoking causes cancer has pushed tobacco use from images of cowboy-cool Marlboro man to the very dark edges of polite society, and somehow lung cancer and the patient diagnosed with it ends up there too, feeling blame and shame. Let's talk about it. Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center, and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcasts.

Mary Lou:

This is Mary Lou and I had surgery in July for lung cancer. I'm an ex-smoker. I quit in 2007. And I remember thinking at that time, when I quit, what if you get lung cancer? That question held more than the fear of cancer itself. I remember a coworker, maybe 20 years ago, who was diagnosed with lung cancer and she told me she was treated with real disdain by her doctors. And if that wasn't sad enough, she had to spend hour after hour on the phone with health insurers who made her argue and beg for coverage of every procedure, every treatment, every doctor visit. It wasn't hard to believe because it was how I felt secretly toward her, but quite consciously toward myself. I had a strong, strong awareness that if I did get cancer, I would have brought it on myself and probably didn't deserve medical care. So around 2012, I read about a clinical trial at Sloan that I would probably qualify for as an ex-smoker. I really had to talk myself into it. That mean inner voice – you brought it on yourself, you don't deserve care, blah, blah, blah – it was really hard. I finally did join the trial. I finally realized nobody was going to treat me badly. Hallelujah. Hallelujah, because that trial is the sole reason why the cancer in my lung was caught early.

Dr. Diane Reidy-Lagunes:

For a time. Mary Lou's fear of a social stigma actually made her think that she didn't deserve medical care. She dreaded the judgment that would come with a diagnosis because she was, at one time, a smoker. And she's not alone. Here to talk about the implication of that and all things lung cancer is Dr. Bernard Park, thoracic surgeon and attending physician at MSK. And also joining us is lung cancer survivor and my dear friend, Reina Honts. Reina is also chair of the Lung Cancer Research Foundation. Both our guests have dedicated their lives to finding the cure for lung cancer through different pathways. Bernie and Reina, welcome to the show.

Reina Honts:

Hi Diane, thank you for having me.

Dr. Bernard Park:

Hey Diane, I'm so pleased to be here with you today.

Dr. Diane Reidy-Lagunes:

Bernie, let's get down to it. Why the stigma? You take care of other types of cancer. What's different about lung cancer, if anything?

Dr. Bernard Park:

There are many reasons that lung cancer appears to be different than some of the other cancers. For one thing, it is true that about 80% of our patients did at one time or another use tobacco to some significant degree. And I think the other critical element of it is that many of our patients are older. So the average age of the patient that I take care of surgically is about 70. And so if you combine those two things together, it's kind of a perfect storm of stigma. You've got older people that may have smoked a long time, their friends or family see that. They see that and they kind of feel like, oh, I brought this disease on myself. It's just that association with a voluntary activity that really puts that at a high risk for being a stigmatized cancer.

Dr. Diane Reidy-Lagunes:

Do you feel that that burden or blame that they place on themselves could actually affect them clinically and medically? And how do you deal with that as a clinician?

Dr. Bernard Park:

Yeah, there's no question. I run the lung cancer screening effort here at MSK and one of the greatest barriers to what we know is a proven modality to reduce lung cancer deaths. I hear from a lot of my patients that they were kind of forced to go get their screening by their loved ones or their doctor, that they were really reluctant to even participate because of two reasons. One, they kind of didn't even want to really know what was going on. They were kind of afraid of finding out. And the other was, again, this idea that was in that short clip, that they kind of brought this on themselves and they didn't really deserve medical attention for that. So it really is an impediment to going and getting a very simple five minute study that could really save their life.

Dr. Diane Reidy-Lagunes:

Reina, if you don't mind, I would love to share your story because I just think it's so powerful.

Reina Honts:

Okay. Well, I was approaching my 50th birthday and I had lost both my mom and my grandmother – my mother's mother – to cancer in their 50s, and that was something that was back of my mind. So I kept seeing these public service announcements, like bus stop ads, in New York city that showed a very young person and a message underneath saying, if you've ever smoked or were exposed to secondhand smoke, ask your doctor about the new lung cancer screening. And I thought, wow, I didn't know there was a lung cancer screening, and clearly I'm a candidate for it. My mom died at 53 of lung cancer. So when I approached my physician at my annual appointment and told her I wanted a screening, she thought I was crazy because, you know, I was a picture of health. I had smoked briefly in my college years like most of us had tried, but that was obviously 30 years prior and she just didn't think I was qualified for it. And I told her, I need to do this. I don't know why, but I'm not excited about my 50th birthday and I need the scan. And she actually ended up ordering me a chest x-ray, which led to a scan the next day, because they did find something that they didn't like. And it was stage one lung cancer.

Dr. Diane Reidy-Lagunes:

It's unbelievable. Both you and our patient, Mary Lou, are both alive because of that early detection. And we're certainly going to talk about that in a moment, but let's go back to that stigma piece. Did you feel that? And what did you tell people when you get this terrible diagnosis?

Reina Honts:

Initially, I think I needed to go deep and take care of myself and was in quite shock. I just didn't think really people my age got lung cancer. I mean, I thought it was truly a smoker's disease. I had no idea that it could affect someone like me. And I have to say though, every time I did talk about it, I did preface it with, I was not a smoker. Because I didn't want people to judge me, and I was afraid that people were going to judge me for being a smoker. I don't do that anymore because I think if you have lungs, you can get lung cancer. It's not something that anyone deserves to get because we make foolish decisions and you can get exposed to many different things that can affect your lungs. So now I try my best to just talk about my story and get the story out. So people know that early detection is important.

Dr. Diane Reidy-Lagunes:

Bernie, Reina says she smoked a little bit. I mean, I think we all did that in college and high school under the bleachers – well, maybe you probably didn't Bernie – but what about that? You know, for our listeners that, you know, did have the casual cigarette. You know, what does constitute a former smoker and who does need to be worried that they actually get the low dose CT protocol that you've created here at MSK?

Dr. Bernard Park:

Sure, that's a really great question. We measure it by what they call pack years. So how many packs a day you might've smoked times how many years. So for instance, if you smoked for a pack a day for 10 years, then you have 10 pack years. So we know that the association of smoking with lung cancer risk is linear. So as you smoke more, your risk goes up. But there is a point at which, if you've smoked less than that, if you quit, then your risk really goes back down to that of a never-smoker. So that number appears to be somewhere around 10 to 15. For the lung cancer screening guidelines, it used to be a pack a day for at least 30 years and quit less than 15 years ago. They did some larger epidemiologic studies that showed that there were certain populations like women and minorities that have actually a higher risk at a lower tobacco exposure, and that younger people in some of those populations are also at risk. So they expanded the criteria to include people that are 50 to 80, and then the tobacco exposure: pack a day for at least 20 years, and then quit 15 years. So for most people, if you don't have a strong family history, if you don't have any other exposures to things like radon or asbestos, because there are many other things out there that can increase your risk. And Reina very eloquently put it, she had a family history of lung cancer, and she's 50. She doesn't look 50, but she's 50. But strictly from the tobacco exposure, probably she wouldn't have qualified for screening, but I think her primary care doctor did a great thing – just getting a simple chest x-ray can also sometimes show something that then leads to the scan. And it's really, unfortunately, the people where it's caught incidentally or accidentally at early stages that are in best position to be treated and cured.

Dr. Diane Reidy-Lagunes:

And again, as you've shared with me and I've learned that 25% of our patients – up to 25% – are never-smokers. So Reina, you certainly had a sixth sense about getting that. Did that come from your family history? I certainly believe in those types of sixth sense, you know, pushing to be an advocate.

Reina Honts:

I did. Cancer was always in the back of my mind and it was always a very scary thing for me. I lost both my mom, and my mother's mother died about a month before I was born, due to lung cancer. I just was terrified of cancer in general. I'm also a big proponent of screening of all sorts. I just had a sense that if I was going to get cancer, I was going to beat it before it got me. So I did have a sixth sense, I guess. One statistic that really sticks with me: The five-year survival rate for lung cancer is 23%. However, if detected early, it jumps up to 59%. I just feel like I was very, very lucky to be able to get screened.

Dr. Diane Reidy-Lagunes:

Bernie, if someone is in that category as a smoker or former smoker and wants to get screened, what should they do? What are the next steps?

Dr. Bernard Park:

At MSK, through our website, we have actually a digital tool – very easy to find on our website – that is a little quiz that can show you if you qualify for screening. And then if you do, it will take you directly to the page where you can schedule your screening visit and talk to somebody to get more information. Most major medical centers have screening programs embedded within them. And so people can simply go to their local hospital website and should usually be able to find it there. In New York City, you could even call 311, the general information health line, and get recommendations for screening. And then, really actually a great resource which I think patients should use more often, is their primary care physician. Because screening does require an informed visit where you meet with somebody to go over the risks and benefits of screening, whether you're eligible, and then they can order the screening for you.

Dr. Diane Reidy-Lagunes:

Bernie, I want to talk about the other risk factors. You talked already about something, you know, things that are in the environment out there and maybe other exposures that some of our patients may have had. But as you know, many of our former smokers have moved on to vaping. And people say that this is a public health epidemic for certainly our younger folks that maybe never even smoked before. But any data that we have yet to show if there's a risk of lung cancer in particular, for those that are vaping?

Dr. Bernard Park:

Clearly vaping has risen exponentially in popularity, particularly, unfortunately, with some of our young younger populations. And the evidence is clear that there are cancer-producing compounds in vaping. Vaping itself, the electronic cigarette, was invented sort of in 2003. And so there's not quite enough epidemiologic data to say that it's conclusively associated with lung cancer, but most experts and most published literature says that there's a really strong risk of vaping and lung cancer. In some ways it was used to try to wean people off cigarette smoking. And what winds up happening is that people smoke cigarettes and they vape, like together. And so I really think that vaping is going to be shown in the next 5 to 10 years to be strongly associated with lung cancer development. And I think it's something that is becoming, if not already, a sort of national and worldwide health problem.

Dr. Diane Reidy-Lagunes:

What about marijuana? That's another one. States are legalizing it, everyone's thinking that it's pretty safe. Any data there to share?

Dr. Bernard Park:

It's a little bit similar thing, although I think marijuana has been around for a longer time. Inhaling the smoke, it is a carcinogen. Now it's only been recently legalized, so we just don't have enough data because people are not reporting it or they weren't reporting it honestly. So it kind of has been flying under the wire. Now that it's legalized in a lot of states, whether it's cigarettes or marijuana, we can get people to be more forthright. Because I think that, related to what Reina was saying before, I think one of the important things is to encourage people to get screened. People do make mistakes and they do things and you can't go back. As far as I know, we haven't invented a time machine so we can't go back and correct our mistakes. And people should not feel like they should be punished for a lifetime just because they had a bad habit in the past. Nobody deserves to get lung cancer. Everybody deserves to try to live a full and good life and a healthy life. And we have a way to really combat a devastating problem. The overall survival rate for lung cancer is no better than about 15 to 20%. Whereas other cancers like prostate or breast, the cure rate is like 90%. So what are we talking about? We're talking about a very deadly problem. Number one cancer killer in men and women by far. It's not even close. So I think whatever we can do to bring attention to it and to reduce the risk factors and increase screening is an effort well spent.

Dr. Diane Reidy-Lagunes:

Absolutely. And like you said, it's just tobacco is so addicting and so cessation is incredibly challenging. We encourage more folks to participate in smoking cessation programs. Let's switch gears a little bit and talk about those fundraising lags. Bernie, you've been dedicating your entire career to caring for these patients and finding those cures. But could you talk to us a little bit about how you find the fundraising as it relates in particular to lung cancer?

Dr. Bernard Park:

Like many of us, I'm always stunned because every October – that's breast cancer awareness month, and of course, a very important disease and a very prevalent disease – everything is awash in pink this and pink that. And it's very interesting because November is lung cancer awareness month and you don't see anything. There's like literally nothing in the national spotlight about lung cancer, which is an extremely deadly disease. And there are so many ways that it can be prevented. I was stunned reviewing the statistics. If you just look at National Institutes of Health funding and the American Cancer Society funding, lung cancer funding is easily half that of breast cancer, and it's basically barely the same as prostate or colorectal cancer. Again, I'm not minimizing these cancers. These are very prevalent cancers in men and women and lead to a lot of health issues, but ultimately extremely survivable, which is great. But lung cancer is hard to cure in the end because we have a hard time detecting it at an early stage. We just have a hard time curing it. It kills over 140,000 Americans every year. And I really think that we could just do a much better job of putting it in the national awareness and trying to raise funds for research, not only for our former smokers, but also for our never-smoking patients who will get lung cancer.

Dr. Diane Reidy-Lagunes:

Reina, you obviously realized this early on in your fundraising efforts that something was just not adding up, as Bernie just explained. How does your role as chair of the Lung Cancer Research Foundation come into play here? And how do you educate all of us and the community and others about this important need?

Reina Honts:

It's not easy, I can tell you that. There's just so much stigma around lung cancer that it's often hard to get people to want to participate in fundraising for lung cancer until it affects them directly. As Bernie said, breast, colon, prostate, they are funded well compared to the number of people that get those cancers. And lung cancer, more people die from lung cancer than all three of those combined. And I think I tell that story often to as many people that will listen so people start to understand how grossly underfunded it is. Huge strides have been made in the last 10 years, thankfully, from people like you and Dr. Park. We actually have two board members that are living with lung cancer. And I just think that there's just so much more potential in science that we need to look at.

Dr. Diane Reidy-Lagunes:

Any last words from both of you about this very important topic? Reina, we'll start with you.

Reina Honts:

I do want to say my care and treatment at MSK was incredible. I have very minimal scars and I was out of there in less than probably five days. But the care – I mean, those warm blankets – the entire team, I mean, they made me feel no stigma whatsoever.

Dr. Diane Reidy-Lagunes:

Thank you. Bernie?

Dr. Bernard Park:

I would like to support this idea that lung cancer is not a death sentence. We have a lot of treatments. We didn't really even touch upon it, but we have all these innovations in surgery now. So the standard of care now is minimally invasive surgery, minimal access surgery. So we don't just remove half a lung or a whole long for lung cancer. Now we can, many times, if we are able to screen and find smaller cancers, we can do much smaller operations. We can take less lung and preserve lung function. We can do minimal invasive surgery, which reduces complications, improves the recovery, not to mention having all these other new personalized treatments that can really increase the cure rates for lung cancer, even locally advanced lung cancer. So what I would say to people who are on the fence about screening: Don't blame yourself. You can't go in the past. Get screened and there are many opportunities for treatment. You don't even have to have surgery. We have stereotactic radiotherapy now, targeted therapies now, so there's a lot of different options. It's just not surgery or chemotherapy until you die anymore. And so I would encourage everybody to think about whether they should be screened and to act on that. And then I would also ask people to really support and not stigmatize those around them that might have it, and to really support efforts to raise awareness and raise funding for this very challenging disease.

Dr. Diane Reidy-Lagunes:

Reina and Bernie, thank you both so much for joining us today. I learned a lot from both of you.

Dr. Bernard Park:

Thanks so much.

Reina Honts:

Thank you Diane for doing this.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or to send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.