Lesser Known Facts and Misunderstandings About Lung Cancer

What I Wish Everyone Knew About Lung Cancer

the word truth spelled out beneath a magnifying glass
The truth about lung cancer. istockphoto.com

Nearly every time we talk about lung cancer with someone we meet, we are reminded of the misunderstandings the public has of the disease. As a quick example, we have often seen complete shock and surprise when I inform someone that lung cancer can occur in non-smokers. (In fact 20 percent of lung cancers in women occur in never smokers.)  

At the same time, we often hear from people with lung cancer that they can't seem to find any long-term survivors of the disease -- or any survivors at all.

What are some of these misunderstandings and lesser known facts about lung cancer that we wish everyone knew?

1. Progress is Being Made

Looking at the overall survival rates for people with lung cancer - rates that have budged only a little in the past few decades -- it may appear that little progress is being made in the treatment of lung cancer. But this is far from the truth.  In fact, due to the human genome project and a better understanding of the molecular biology of tumors, the future of lung cancer treatment, at least for non-small cell lung cancer, is exciting.  We now have targeted treatments for people with subsets of lung cancer known as EGFR positive, ROS1 positive, and ALK positive lung cancer. And while it's general knowledge that new treatments take a long time to develop, the story behind ALK-positive lung cancer and the treatment crizotinib reinforces a spirit of optimism.

In 2007 scientists discovered that for small percent (3-5 percent) of people with lung cancer, the growth of the tumor is driven by a mutation known as an EML4-ALK rearrangement. Only 4 years later, in 2011, the targeted drug crizotinib was approved by the FDA for treatment of this subset of lung cancer.

 In 2015, other drugs are now available, either approved or in clinical trials, and there are people who are even using 3rd generation drugs in this category (after developing resistance to two) who are thriving.

Other advances are taking place as well.  New less invasive means of surgery for lung cancer are becoming mainstream. Radiation therapy is also becoming more specific - delivering a higher dose of radiation to tumor tissue while sparing surrounding normal tissue to a greater degree than in the past.

2. There are Long-Term Survivors

We're often asked if there are any long-term survivors from lung cancer -- especially stage 4 lung cancer. The answer is yes. If only we had those "beam me up Scotty" devices from Star Trek so wecould beam people back in time to the last LUNGevity HOPE Summit in Washington DC in 2013.  Meeting not just one 13 year survivor of stage 4 lung cancer, but a room of close to a hundred lung cancer survivors, brings us tears of joy each time we remember it.

Addendum: At the 2014, 2015, and 2016 HOPE Summits in Washington DC, we met even more long-term survivors of lung cancer. We can't tell you the hope we felt as we listened to story after story after story of people now alive because of newly approved drugs or drug available in clinical trials, who even 3 years ago, would not have been present to share their story.

As another note here, it's important to understand what survival rates mean. Survival rates are statistics. People aren't statistics. Everyone with lung cancer is different, and every lung cancer is different. In addition, it's important to keep in mind that the statistics we have for lung cancer are several years old by the time they are reported. For example, the most recent survival data we have for lung cancer is from 2009 -- new drugs for lung cancer have been approved since that time.

If you wish to find or hear about long-term survivors of lung cancer there are a few places you can start. Of course, there is the annual HOPE Summit we mentioned above (what we didn't mention was the cost of air travel and hotel -- free.)   

3. There is Support

Though it has lagged behind that for breast cancer, support for lung cancer is gaining speed in the United States. In the past it was common for someone with lung cancer to never meet another survivor; access to other people with lung cancer is now available 24/7 via the internet. In addition to community support groups, online support groups, and chat rooms, several lung cancer organizations offer one-on-one supportive services for both people with lung cancer and their caregivers. Check out this article on how to find a lung cancer support group.  

4. Non-Smokers Get Lung Cancer Too

As noted above, 20 percent of women who develop lung cancer are never smokers, and 10-15 percent of people overall with lung cancer are never smokers. What may surprise you even more is that the majority of people who develop lung cancer today are non-smokers, meaning that either they never smoked, or are former smokers who quit in the past.

5. More Women Die From Lung Cancer Than From Breast Cancer

Though we tend to hear more about breast cancer in women than lung cancer in women, lung cancer kills more women in the United States each year than does breast cancer. Unfortunately, while we think of our mothers, our sisters, and our daughters with breast cancer, we forget that we are more likely to lose our mothers and sisters and daughters to lung cancer. On another note, while we hear about mammograms and their role in the early detection of breast cancer, the use of CT screening (in certain people) for the early detection of lung cancer has been slower to take off.

6. You Don't Need to Accept a "New Normal"

We've heard it so often now it's almost become cliche. After cancer treatment, survivors need to "accept a new normal." But why is it different with cancer? If you know someone who has had a stroke, or a knee replacement for that matter, you probably heard that rehabilitation was a very important part of their recovery. With cancer, it may seem that instead you are told "you are lucky you lived" and sent on your way. We don't know exactly how helpful rehabilitation is during and after lung cancer treatment, but early studies suggest that it improves quality of life and the ability to exercise and participate in daily activities. If your breathing isn't up to par with what you experienced pre-lung cancer, ask your doctor if pulmonary rehabilitation may be helpful for you.

7. Alternative Therapies May Help You Thrive as You Survive

Cancer centers are increasingly offering "integrative" treatments to their patients with cancer. While these treatments are not designed to improved survival, many of them have been shown in credible studies to improve the quality of life and well-being of people living with lung cancer. Check out some of these therapies, as well as the medical research backing their use for people with cancer.

8. There is Free Stuff for People With Lung Cancer

Throughout the year, and especially October, you may have heard of the freebies available for breast cancer patients. But free stuff isn't limited to people with breast cancer. Check out what's available free for those with lung cancer, ranging from wigs to retreats.

9. Even if Somebody Has Smoked, Nobody Deserves Cancer

Though smoking is clearly a risk factor for lung cancer, nobody deserves to have lung cancer.  Why is it that when someone is diagnosed they are bombarded with people asking how long they smoked? We don't usually ask people with colon cancer how long they have been sedentary, or interrogate people with breast cancer as to the duration of time that they breastfed each of their children. Nobody deserves to get cancer, and everyone with cancer deserves love, compassion, and excellent medical care.

10.  There is Always Hope

Lastly, and most importantly, there is always hope. For some people, that may mean participating in a clinical trial. But even if you have decided not to pursue treatment there is always hope -- hope for good quality of life during your remaining days. Hope for those in your family who will carry on your legacy.  Hope for a future in which lung cancer is preventable and more treatable. Hope for what awaits you on the other side.

Next Steps:

If you are living with lung cancer, see if you've heard of these things that could make a difference in your quality of life and possibly survival:

If you have a loved one with lung cancer  it's not always obvious what you should and shouldn't say or what you should or shouldn't do to help:


Cagle, P., and L. Chirieac. Advances in treatment of lung cancer with targeted therapy. Archives in Pathology and Lab Medicine. 2012. 136(5):504-9.

Centers for Disease Control and Prevention. Lung Cancer Statistics. Updated 10/23/13. http://www.cdc.gov/cancer/lung/statistics/

Pillai, R., and S. Ramalingam. Advances in the Diagnosis and Treatment of Non-Small Cell Lung Cancer. Molecular Cancer Therapeutics. 2014 Feb 10. (Epub ahead of print).

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