What We Wish Everyone Knew About Lung Cancer

xray of lung cancer

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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% 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?

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 a small percent (3-5%) 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. The first immunotherapy drug was approved in 2015 and there are now four available. For the first time ever, some oncologists are even whispering the word "cure" in the same sentence as stage 4 lung cancer for some people.

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.

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 we could beam people to the LUNGevity HOPE Summits in Washington, DC. 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.

At the 2014, 2015, 2016, 2017, and 2018 HOPE Summits, 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 drugs 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.

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. 

Non-Smokers Get Lung Cancer Too

As noted above, 20% of women who develop lung cancer are never smokers, and 10-15% 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 may have quit in the distant past. Lung cancer in non-smokers is different in many ways, but is the same disease. Though it's important to educate everyone that anybody can get lung cancer, people deserve compassion and the best of care whether or not they never smoked or are lifelong smokers.

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.

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.

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.

Therapies being used for people with cancer include:

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.

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.

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.

Supporting a Loved One Who Is Diagnosed

A final point about what everyone should know about lung cancer, is how to support a loved one with the disease. 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. You may be surprised that one of these things not to say is "what can I do to help?" It's not that you shouldn't offer your help, but offering specific assistance, such as "can I stop by next Wednesday and bring you dinner and wash some windows" is much better. Asking someone to call you if they need you puts the burden of calling on them. And there are already too many decisions to make and things to do while living with lung cancer. Another thing most people don't realize is that the best thing you can do to support a loved one with cancer is to simply listen. Far too many people try to "fix" things that are unfixable, something that only adds stress to the one living with the disease.

Finally, perhaps the best thing you can do as a caregiver is care for yourself. Practicing good self-care is not being selfish. It is caring for yourself so that you are able to fully be what your loved one needs.

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