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Three Myths Busted About Non-Small Cell Lung Cancer

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What’s the truth about non-small lung cancer myths? In the “Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer” program, expert Dr. David Carbone from The Ohio State University Comprehensive Cancer Center (OSUCCC) explains accurate information about three non-small lung cancer myths. 

1. Lung cancer is a disease of the older population.

Unfortunately, anyone of any age can develop lung cancer. A minimum age of 50 or older is required for some lung cancer CT screening programs, but many patients in their 30s or 40 or even younger have developed lung cancer. Lung cancer treatments have advanced in recent years, and research funding is important to continue developing new effective treatments.

2. Quality of life is greatly diminished after undergoing treatment for lung cancer.

Contrary to what many people may think, quality of life usually improves after starting lung cancer treatment. Lung cancer specialists want their patients to feel better, and improving their quality of life is the primary concern for them.

3. There are no effective treatments for advanced lung cancer.

Advanced lung cancer treatments have increased and improved as more research has been carried out. Time of survival was formerly measured in the number of months. But as better treatments have been approved for use, time of survival has been measured in the number of  years instead. Treatment options can vary by the situation of each patient, but treatments for advanced lung cancer have in general become more effective.

By understanding more about non-small cell lung cancer, detection efforts can be increased to improve health outcomes for patients of all ages, health situations, and lung cancer stages. If you want to increase funding for lung cancer research, take action to join lung cancer fundraising activities. In addition, the Lung Cancer Research Foundation is one credible resource for finding lung cancer information.

The Case of Lung Cancer

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Let’s face it. What we know about lung cancer is grim. It is the leading cause of cancer deaths in the United States for both men and women, and more than half of those with lung cancer die within one year of being diagnosed. The five year survival rate is only 18.6 percent, so that means that out of 100 people diagnosed, 82 of them don’t make it. The data alone is enough to be discouraging, but couple that with the stigma attached to the disease, and the people who have it, and the public perception about lung cancer becomes extremely negative.

The stigma attached to lung cancer comes mainly from the connection the disease has to smoking. For more almost seventy years now, we’ve known that lung cancer is a risk factor of smoking. Anti-smoking and tobacco campaigns have been successful in making sure the public understands that if we don’t want to get cancer, we shouldn’t smoke or use tobacco products. The good news is that as smoking rates have decreased, so have lung cancer rates. The bad news is that as lung cancer became known as a “smoker’s disease”, people began to believe that if you got lung cancer, you were to blame. As a result, lung cancer patients may feel that they receive less sympathy from their healthcare providers and others, and feel compelled to hide their condition causing them to suffer from guilt, anxiety, depression and isolation. Patients suffering from a stigmatized disease also may avoid or delay seeking treatment or a second opinion, and may receive lower quality of care. In addition, the clinical guidelines, diagnostics, and treatments for lung cancer aren’t as comprehensive as they are for the cancers without stigmas attached. Further, there is less research, data, and funding about how to increase lung cancer survival rates.

Often, it is the survivors of a disease, or family members who have lost a loved one, who form the advocacy groups, drive the fundraising efforts, and are the proponents for research. That hasn’t seemed to be the case for lung cancer for a couple of reasons. First, the stigma attached to lung cancer prevents survivors from speaking up because of the shame and guilt associated with having the disease. The stigma also appears to carry over to family members and others, such as celebrities and community leaders, who don’t feel comfortable advocating for those who are perceived to have caused their own illness. Secondly, lung cancer has a low survival rate, and, therefore, fewer survivors to lead the charge.

In order for the fight against lung cancer to have some of the same advances that less stigmatized cancers have, the public awareness needs to go beyond the labeling of lung cancer as a “smoker’s disease.” People who have never smoked, and those who quit many years ago, get lung cancer. Lung cancer can also be genetic. There are many risk factors for lung cancer in addition to smoking. They include: being exposed to secondhand smoke, asbestos, arsenic, chromium, beryllium, nickel, soot, or tar; exposure to radiation therapy to the breast or chest, radon, and imaging tests such as CT scans; living where there is air pollution; and a family history of lung cancer. While we don’t want to diminish the risk of smoking and the benefits of giving it up, it is important to note that not all smokers get lung cancer, and not all people with lung cancer are smokers.

Despite the stigma and negative public perception, there are organizations such as the American Lung Association and Patient Empowerment Network who are working to reduce the stigma of lung cancer and raise awareness about the disease. The PEN Living Well with Lung Cancer series is a live-streamed webinar program where patients, and their family members and caregivers, have the opportunity to interact with experts in the lung cancer field. The programs include panel discussions and a question and answer session. The program is recorded and made available through our website. PEN also provides town meetings and conference coverage with topics pertinent to those affected by lung cancer. Through our Notable News posts on our blog, we strive to provide patients with information about the latest advancements in all cancers, including lung cancer. This month you’ll discover that there is good news about lung cancer, thanks to new findings about sugar and cancer’s attraction to it. You can find that information and other updates here.

It is important for lung cancer patients, and all cancer patients, to maintain focus on the good news and to have hope. Every 2.5 minutes, someone in the US is told that they have lung cancer. Wouldn’t it be wonderful if they could also be told that there is hope?

Sources:

https://seer.cancer.gov/statfacts/html/lungb.html

https://www.lung.org/assets/documents/research/addressing-the-stigma-of-lung-cancer.pdf

https://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq#section/all

https://scienceblog.cancerresearchuk.org/2018/11/16/science-surgery-why-do-never-smokers-get-lung-cancer/

Nancy’s Lung Cancer Journey

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No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Connecting to Cancer Patients Online

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Deana Hendrickson talks about how important it is to connect with other lung cancer patients and advocates online. Connecting online to patients with your same disease allows you to make amazing and empowering connections. Check out the whole clip below as Deana explains:

Empowering Lung Cancer Patients Town Meeting from Patient Empowerment Network on Vimeo.

The Stigma of Lung Cancer

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Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer 

In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.

How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.

 

If you think I’m exaggerating, take a look at the numbers:

  • Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
  • Lung cancer is the second leading cause of all deaths in the US.
  • The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
  • 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
  • Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
  • Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.

Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.

Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.

November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.

And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….