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GRACE :: Lung Cancer

I’m in the Driver’s Seat

I was diagnosed with non-small cell lung cancer in April 2005. I was only 45 years old, I had never smoked, and I thought lung cancer wasn’t something I would ever have to worry about. Now I know that upward of 15 percent of lung cancer patients are never smokers.

Three years after my initial diagnosis, doctors discovered I had the ALK mutation. I had no idea what that meant or that I would even still be talking about it in 2014. In fact, I was seeing a psychologist to prepare for my death.

It’s Possible to Live WITH Cancer

Linnea and her son Peter

One day, I went to see my oncologist to talk about a scan. At that appointment, he told me about a clinical trial for ALK positive lung cancer patients. I was the fourth person in the world to join. That trial quickly led to the approval of a drug called crizotinib, or Xalkori – which has since kept many people alive for much longer than anyone could have expected. Today, newer drugs recently approved or expected to be approved soon for ALK patients are leading to even better outcomes.

I wish more patients would participate in clinical trials – and not because it’s for the greater good of lung cancer research. Without a doubt, clinical trials have extended my life, but just as importantly, they have empowered me as a patient. It’s right there in the description: You participate. Your feedback is essential to the process. That fact alone has made me much more involved in my treatment.

As time has gone on, my familiarity with lung cancer and my own mortality has made it all less frightening to me. Consider it: If you are in a room and you think something is in the closet but you never open that door up, you’re going to stay afraid. If you open it and look, now you know what you are or are not dealing with, and its power to surprise you has diminished.

Linnea quote Awkward QuestionI research my disease quite a bit. To me, it’s the difference between being a passenger or the driver in a car. If you’re the driver, you determine where you’re going. This is my life and my body. Nobody cares as much about me as much as I do.

I love my medical team. In fact, I consider my oncologist my personal hero. But once in a while I’m required to do something because it makes sense for the trial sponsor, but not so much for me and I push back. I wouldn’t have the know-how or the confidence to speak up for myself without the empowerment that comes from me sitting in the driver’s seat. 

Lung cancer is a very difficult disease – not just because it has a high mortality rate and is hard to treat. It’s also misunderstood in a lot of ways and comes with a lot of stigma attached to it. Invariably if somebody hears I have lung cancer, they will ask me if I smoked, which is, if you think about it, kind of an awkward question. It seems to imply that perhaps I did something to deserve my disease. 

I also think the stigma impacts people’s generosity as far as charitable donations go. Lung cancer kills more people than any other cancer and yet it remains incredibly underfunded. Recognizing Lung Cancer Awareness Month in November is super important for this reason.


It’s Possible to Live WITH Cancer

This November, GRACE Honors the Empowered Patient.November is Lung Cancer Awareness Month. To mark it this year, GRACE is celebrating the empowered lung cancer patient. In this video, Linnea Duff, a 10-year stage IV ALK+ lung cancer patient, shares her journey from stunned patient to empowered patient.

Watch, read, and then share your own stories of empowerment in our online forum. Your story may inspire others.

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Part 2: Lung Cancer Is Not Your Fault, Even If You Smoked

Read Part 1

Smoking is the most common cause of lung cancer – 85% of lung cancer patients have smoked at some point in their lives (or, stated another way, 15% of lung cancer patients have never smoked).  While quitting smoking certainly decreases the risk of getting lung cancer, more than half of lung cancer happens in people who have quit.  

Reason #3 to not blame the lung cancer patient:

Luckies adNicotine is really, really addictive.Asthma cigs ad

After passing step one of my medical boards, my father decided to take me to Las Vegas to celebrate and for some father/son bonding. On our first night, he awoke in a cold sweat. As a burgeoning doctor, freshly woken from sleep, I was ready for action, “Dad, do you have chest pain?” “Can you breathe?” “What’s going on?” My father, almost 20 years after quitting smoking, had awoken with a dream of having a cigarette. Nicotine is that addictive. For a while, scientists had believed that it was the second most addictive chemical known to mankind, but many now rank it ahead of heroin. As anyone who has known addiction in their lives or the lives of someone they’ve cared about, addiction takes choices away.

While I’m sharing personal stories, I will admit that I smoked a cigarette in college. Some people, like me, smoked one cigarette, found nothing pleasing in the experience, and stopped. Other people have a very different experience—they find cigarettes pleasurable. Maybe they try a cigarette in their teens socially, perhaps after a few drinks. For a while they’re social smokers, never buying their own. Then, over time, they find that they’re craving the cigarettes. After a breakup or some other stressful experience, they smoke more. Pretty soon, they have a habit, and wake up one day, reach for a cigarette, and realize that they are an addicted smoker.

The tobacco industry has supported this process. Big Tobacco historically advertised to children. They promoted an image of smoking as cool. They misrepresented and even lied regarding the health effects of smoking cigarettes. The delivery of nicotine per cigarette and its speed of administration are more tightly controlled than many pharmaceutical products. Simply put, cigarettes are delivery devices for a harmful drug that, for reasons of American culture and law, are legal.  

Legally, you must be 18 years of age to purchase cigarettes in the US. But, in reality, teenagers find access to cigarettes fairly easily. Many teenagers are addicted to these harmful products long before they are smart enough to reject them; quitting later isn’t so easy. 

In America, we have a strong culture of personal responsibility, but the reality of nicotine addiction does not support this idea—personal choice, at best, is very incomplete when addictive substances are at play. I think that we can all agree that we should educate our children and teenagers about the harms of cigarettes and give them the coping skills to reject them. I think that we can all agree that smokers should be motivated to quit and that the medical system should give them all the counseling and medicines that can help. But, no matter how much we endorse empowerment of individuals to never start smoking or for smokers to quit, we cannot ignore the hard data that suggests that there are powerful forces at work other than personal choice.

Reason #4 to not blame the lung cancer patient:

A Non-Smoking WomanStigma hurts the patient (smoker or not) and it hurts efforts against lung cancer.

Stigma occurs when society views a person or group as inferior or disgraced because of some characteristic.  In other stigmatized diseases, stigma has been shown to negatively affect patients and health outcomes and some data demonstrates the same in lung cancer. Stigma also negatively affects public efforts to fight lung cancer. Although a nonsmoking woman has greater chance of dying of lung cancer than of breast cancer, lung cancer receives $1,337 in research funding per death while breast cancer receives $16,850 per death. More Americans will die this year of lung cancer than colon cancer, breast cancer and prostate cancer combined. America  (correctly) recognizes that breast cancer is a terrible disease — in October, the pink ribbon is everywhere. But where is the white ribbon in November?

And, if we want to talk about stigmatized and invisible smoking-associated cancers, dear reader, can you tell me what color the head and neck cancer ribbon is? Don’t feel bad if you don’t know; I didn’t know either until I started treating head and neck cancer patients — it’s red and white striped. Simply stated, efforts against breast cancer are popular; companies want to associate themselves with efforts against breast cancer because it improves their images. In contrast, fighting lung cancer, head and neck cancer, and other smoking related cancers is less popular, at least in part, because patients are blamed for their disease. A large survey of the general public found that 59 percent believed that lung cancer patients were at least partially to blame for their cancer. Despite the poor funding described above for efforts against lung cancer, only 12 percent of Americans choose it among cancers to deserve greater support.

A suggestion for refocussing our attention

I suggest that lung cancer patients should not be asked if they smoked—it is irrelevant because neither smokers nor nonsmokers deserve lung cancer or should be blamed for it. If you have been touched by lung cancer, consider doing something about it. Consider joining your local advocacy organization—in North Carolina I’m a big fan of the Lung Cancer Initiative and on a national level, there are many fine organizations to join. Better yet, if you think that we do good work here at GRACE, consider donating to us! 

Regardless, I’d like to spend less time on blame and more time on real action.

Part 1: Lung Cancer Isn’t Your Fault, Even If You Smoked

Smoking is the most common cause of lung cancer; 85% of lung cancer patients have smoked at some point in their lives (or, stated another way, 15% of lung cancer patients have never smoked).  While quitting smoking certainly decreases the risk of getting lung cancer, more than half of lung cancer happens in people who have quit. 

From Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults -  United States, 2006”, November 9,2007/56(44): 1157-1161, Table 2

Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report, “Cigarette Smoking Among Adults – United States, 2006”, November 9,2007/56(44): 1157-1161, Table 2

Reason #1 to not blame the lung cancer patient:

He or she may have never smoked.  I just visited a very young patient of mine while he was dying at home of lung cancer.  He never smoked.

Reason #2 to not blame the lung cancer patient:

The smoking may not have caused the cancer.

Smoking is not the only cause of lung cancer.  Other causes include occupational carcinogen exposure, radon, and outdoor air pollution.  There are probably other, as yet undiscovered, causes. 

I’ll add a cause that is rarely directly discussed: an (un)healthy dose of bad luck. The majority of active smokers and former smokers do not get lung cancer.  Cigarette smoke contains numerous chemicals that can cause mutations, or changes in the DNA of cells. Some DNA codes for important proteins—mutations to these areas of DNA have the potential to cause cancer.  Other parts of DNA are “junk” that don’t actually code for anything.  While there is active research into why some people get cancer from cigarette smoking and others don’t, the luck of having these mutations in “junk” regions or in important ones surely plays a major role. 

Jared Weiss Horizontal

Dr. Jared Weiss (Courtesy of UNC Lineberger)

Smokers and nonsmokers have similar chances of developing smoking-unrelated lung cancer. Scientists now believe that non-smoking related lung cancers tend to be biologically simpler—they have one or two “driving” mutations that transform a healthy lung cell into a lung cancer cell (for example, EGFR or EML4/ALK).  In contrast, smoking-related cancers may have more mutations that together contribute to transforming that healthy lung cell into a cancerous one.  But, there is absolutely nothing about smoking, even heavy smoking, that protects a person against a smoking-unrelated lung cancer.

This last point is important not only for how we think or feel about people with lung cancer, it also has a very important practical consequence for medical practice. All patients with metastatic non-squamous non-small cell lung cancer (the type that might have mutations that can be treated with targeted therapies such as erlotinib or crizotinib) deserve molecular testing, regardless of how much they smoked. 

In my practice, I have found several patients with EGFR mutation (treatable with erltotinib or afatinib) and at least 1 with EML4/ALK (treatable with crizotinib) amongst patients with a smoking history.  Statistically, patients who have smoked a lot may have a lower probability of having such mutations, but there is still a real chance, and I feel strongly that these patients deserve testing. 

Part 2:

Nicotine versus heroin.


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