Imagine being diagnosed at the age of 21 as a never-smoking individual and college athlete.
BY Kristie L. Kahl
Lung cancer is the second most common malignancy among men and women in the United States, with more than 200,000 new cases estimated to be diagnosed this year alone, according to the American Cancer Society
In conjunction with Lung Cancer Awareness Month – observed annually in November – many advocacy groups seek to raise awareness while promoting various prevention, screening and treatment options for the disease.
However, it appears most people are unaware of the stigma surrounding lung cancer as a smoker’s disease, and the implications it may have on patients. For example, an American Lung Association
survey showed this stigma negatively impacted patients diagnosed with lung cancer, in particular because of their fear of being denied treatment, feelings of having to hide their condition and the psychosocial distress it may cause.
Advocates, including lung cancer survivor Taylor Bell Duck, have fought to end this stigma surrounding lung cancer by providing tips for patients and raising awareness around the disease as a whole.
spoke with Duck, as well as her cardiovascular thoracic surgery physician assistant Scott S. Balderson, PA-C, from Duke University Medical Center in Durham, about Duck’s journey with lung cancer, the pair’s advocacy efforts with Your Cancer Game Plan and how we can end the stigma surrounding the disease once and for all.
Can you talk about your journey as a young adult battling lung cancer?
Imagine being diagnosed at the age of 21 as a never-smoking individual and college athlete. That is really kind of my story. As a child, I dreamt of playing collegiate soccer and that dream became a reality when I got the opportunity to play at East Carolina University. I got there for preseason in August 2005, and quickly realized I was unable to pass a fitness test during camp, while having numbness and tingling in my toes when I exerted myself at high levels. Immediately they were concerned and did some work-ups to try to understand exactly what was going on, but we were unsuccessful in identifying any causes.
So, after a year of playing soccer and being miserable, I made the difficult decision to stop playing, and to hang up the cleats for good and get involved in other campus activities. In doing so, I really did not feel any better, and I kept getting reoccurring upper respiratory problems and pneumonia. I one day randomly ended up in the emergency room because I thought my appendix was rupturing, and when they did a CT scan of my abdomen and pelvis, I quickly was told that I had a partially collapsed lung and a large upper load lung mass, which ultimately was a diagnosis of lung cancer at the age of 21.
As part of Taylor’s health care team, can you tell us about Taylor’s journey from a treatment standpoint?
I met Taylor in the first few hours after she was diagnosed. You could imagine that the discussion of lung cancer can get sophisticated and complicated very quickly. So, it was very important for me to be able to break down some very sophisticated concepts for her in a way that she could understand and then be empowered with the ability to make decisions on her own behalf. My role was to try to get to know her, learn more about her story and most importantly, for her to get to know me and the team so that we could communicate confidence, peace, comfort optimism and hope that we would successfully help her navigate her way through this battle that she was now facing.
Taylor showing up in our clinic was a heart-wrenching experience, but it was one that was inspiring to me because she went from someone who was terrified, angry and frustrated to this eye of the tiger, division I athlete who was all in. She went into this fight-victory mode, and that was inspiring. And now she is giving a voice to a population of patients, who otherwise society would have cultural bias against, to get awareness and advocacy out there.
What helped you most throughout your journey?
I immediately tried to arm myself with as much information as possible, and educate myself about the disease and provide myself with important questions to ask to make sure I understood what I was going in to so I could have the best outcome possible. The more you can prepare yourself from a knowledge-base ¾ especially from an emotional standpoint, physical health and nutrition – it ends up being imperative for successful outcomes. That is really what I tried to do was build a team around me, not only my healthcare team, but friends and family as well, to try to have a larger view of the situation and how we could be most successful.
What advice do you give patients facing a lung cancer diagnosis?
I always encourage patients to get a second opinion. What is most important is that patients are seen within a multidisciplinary center setting where there is a team of physicians who evaluate your diagnosis and case and come up with a plan of care based on your particular disease. Lung cancer is more and more tailored to the individual, and nobody’s treatment is the same. So, I think having a team that can work together to come up with a plan of care is critical to patient success. I always encourage someone who is newly diagnosed to seek out care that is multidisciplinary because it is out there, it is available and it is key to beating this disease.
I agree wholeheartedly. The multidisciplinary evaluation between surgery, medical oncology and radiation therapy, as well as diagnostic experts – having access to them in one institution is very helpful.
The other part is to understand how powerful it is for the patient to have the opportunity to be empowered to make their decisions. When we go through a process of how we evaluate patients for what is the most viable treatment plan for them, it is still a matter of making a recommendation. It is still up to the patient for them to proceed, therefore, it is critically important to be able to have a discussion with the patient, in such that you know they are being able to understand exactly what is being done for them, why it is being done for them, what you hope to gain from it, what the treatment goals are. That helps them to make reasonable decisions. I have dealt with a malignancy in my own life, and I can tell you I’ve dealt with the other side of the lab coat. It is a very big deal, and one of the reasons why I am passionate about having the opportunity to partner with Taylor, Merck and Your Cancer Game Plan, to be able to try to increase advocacy.
What are your recommendations for addressing the stigmas surrounding lung cancer?
It is out of curiosity that people ask, “Did you smoke?” What they don’t realize is that it can be incredibly offensive to some patients. What is really important to know is that the people who started the habit may years ago, before we knew what the effects were from cigarette smoking, we can’t blame them for that addiction. What we can do as health care providers and people who are in the oncology space is to help them quit. We should have the same compassion and understanding that we would have for someone who didn’t smoke. No one deserves this disease, regardless of bad decisions. It has been my mission to take away the stigma of the disease and let people know that this can happen to anyone, regardless if you smoked or not. And whether you made a bad decision or not, is really nobody’s business other than your own. It is really important to have compassion and understanding, and help those patients access care.
Taylor’s story provides an entrée for discussion to be able to illustrate that point that yes, lung cancer is most commonly seen in smokers, but there is a large population of people who are diagnosed with this disease who have never smoked before. Trying to change the stigma starts with being able to get Taylor’s story out there so people can realize it is not at all like it appears. We have to get to a point someday where there is not that surprise that someone who never smoked was diagnosed with lung cancer.
Can you tell the readers more about your advocacy efforts?
I was given the opportunity to partner with Merck and other cancer advocacy organizations to speak on behalf of Your Cancer Game Plan and as a lung cancer survivor. I help to not only provide people with my story but also with access through YourCancerGamePlan.com
to seek out incredible resources, and drive them to additional places where they might seek additional information to help patients through their battle. I made a deal with myself shortly after my diagnosis to take the opportunity to tell my story and advocate for everyone who doesn’t get the chance. It is important that you take that opportunity. Ever since that day, I have really tried to take any opportunity, no matter how big or small, to speak up about the disease and advocate on behalf of the millions of people that will be diagnosed in years to come, and bring awareness to lung cancer.
I sit in the same position as Taylor, just on the other side of the coin. Taylor has this unbelievable story of inspiration that I have drawn on countless times in my career. Often times, I find myself closing my eyes and I think about Taylor and the inspiration that she is, and that allows me to go to a place to engender a certain amount of confidence, comfort and peace so that I can communicate to patients in a very authentic way that there is hope. And it is through this kind of communal effort that we will push the needle that might also result in earlier diagnoses. And with earlier diagnoses, that leads to greater outcomes, which leads to more lives saved, and more Taylor Bell Ducks out there. In my world, if I finish my career knowing the numbers were far lower than when we started, that means tomorrow is better than today and that is why we are all here.
Is there anything we have not touched upon, that you think our audience should know?
Go to a center that treats lung cancer as an emergency, and who is going to push the envelope in terms of offering really great care. Do not settle for something that is convenient or the bare minimum. In order to beat this disease, we have to be on the cutting edge and push the envelope. The more patients are willing to demand that from their healthcare providers, the better off we are going to be.
And even more so, it is important to be your own advocate to empower yourself with knowledge and information, and do not be afraid to ask questions. If you are confused about something, or do not understand, don’t’ be afraid to say, “Doc, I’m not sure what you meant by that,” because I cannot tell you how many times I got in that office and just told them to bring it down a notch or two so that I could understand. The first time I did it, it was pretty embarrassing, but after that it made me feel good because they could talk to me on my level.
You’re the patient, but you’re also the boss. It is very important for people to think in such a way that enables you to surround yourself with a panel of experts to counsel and help navigate through this process.