If you’ve recently been diagnosed with lung cancer, you’re probably trying to understand as much as you can about the disease, how you got it (especially if you don’t smoke) and what your next steps should be.
Of course, these are things you should discuss with your doctor, but those conversations can be stressful. It can be hard to remember what he or she said. And coming up with useful questions may be nearly impossible until after you’ve processed your diagnosis.
It’s much easier to learn at home, where you’re more comfortable and you can take things at your own pace. That’s what we’re here for. This page links you to resources to help you learn and find support from other lung cancer patients or experts who understand.
It’s not a complete list of every website or resource that might be useful. Instead it’s a place to get started without having to think too hard. Because we understand that right now any thinking at all may be hard.
As you dig into these resources, you’ll start to feel more confident that you can take this journey. And, if you need too, you’ll be able to find more information on your own. Some of these resources do link out to other good resources. Or you can do your own search. We have a research tips page that may help.
Eventually you will want to bring your questions and the information you’ve found to your doctor. But that conversation will be easier (not easy), once you have a better idea of what your journey is going to look like.
Lung Cancer Overviews
A good place to start learning more about your diagnosis is with overviews that give you the basics plus a little detail. Sometimes that’s enough. But they can also help you understand enough to be able to ask the right questions so you can learn even more.
These are some good, easy-to-understand overviews.
Lung Cancer, Knowing the Basics: This overview is from the American Lung Association. It covers how your lungs work, the types of lung cancer and some current statistics about lung cancer. It’s part of an Understanding Lung Cancer guide that also includes information on treatment and support.
About Small Cell Lung Cancer (SCLC): This overview from OncoLink focuses specifically on small cell lung cancer which is less common but more aggressive (and so potentially more dangerous).
About Non-Small Cell Lung Cancer (NSCLC): Also from OncoLink, this guide explains NSCLC, the more common form of the disease. There is a lot of overlap in the more general information on causes, symptoms and diagnosis. It’s in the staging and treatment options where you’ll find differences.
Lung Cancer Overviews from MedlinePlus: This site also offers separate overviews for small cell lung cancer and non-small cell cancer. These are very basic but include pictures and links to many of the symptoms, tests and treatments mentioned.
Organizations Devoted to Lung Cancer
There are a lot of organizations that are working to fund research, increase awareness and give support to cancer patients. Some are concerned with cancer in general. Others, like the ones listed here, focus specifically on lung cancer.
LUNGevity: This organization funds research into early detection and improved treatment of lung cancer to move closer to achieving its goal of “a world where no one dies of lung cancer.” It also holds awareness and fundraising events across the country.
Lung Cancer Alliance: This organization offers information and support to lung cancer patients and their loved ones. Its goal is to reduce deaths from lung cancer by 50% or more by 2020. We link to some of their support programs in the Support section. Or explore the site to see what they offer.
Lung Cancer Foundation of America: This organization’s stated mission is “…the dramatic improvement in survivorship of lung cancer patients…” To achieve this goal, the foundation funds research and works to increase awareness of the disease. The website also has a section to help patients better understand lung cancer, with both written information and short videos.
Lungcancer.org: This isn’t actually an organization itself. It’s a service from CancerCare, which provides free information, support and other assistance to people with a variety of cancer diagnoses. Lungcancer.org is its hub dedicated to lung cancer patients. CancerCare offers counseling, support groups and information to cancer patients.
Lung Cancer Research and Clinical Trials
Researchers are working hard to understand lung cancer, what causes it and the best treatments for the different kinds. If you’re interested, lungcancer.org offers a guide to some recent research in these areas. Of course, there’s a lot of other work going on, too.
You might even like to be a part of this work by joining a clinical trial. These trials are not for everybody, but if you qualify, they may offer you access to some promising new treatments. Of course, you’ll want to discuss all your options with your doctor.
ClinicalTrials.gov: The National Institutes of Health maintains this database of clinical trials submitted to it by the trials’ sponsors and/or lead researchers. We link to a basic search for lung cancer. You can also search for the specific kind you have (for example non-small-cell lung carcinoma), which should give you a shorter list. You can also modify any search to show only open trials that are currently recruiting, only trials near you, or other limiting conditions.
CenterWatch clinical trials listing: CenterWatch maintains a list of industry-sponsored clinical trials that are currently looking for people to enroll. As of this writing, there are more than 1200 listed for lung cancer. You can filter the results by your age, location and more to make it more manageable.
Clinical Trial Matching Service: This service, from Lung Cancer Alliance and EmergingMed, helps you find lung cancer trials looking for patients like you. You can call to talk with a specialist or browse open trials online. The database includes industry and government sponsored studies.
Forums and Support Groups about Lung Cancer
As important as support from family and friends is during this stressful time, sometimes you need to connect with people who really understand because they are or have been right where you are now.
There are a lot of online and local support communities dedicated to cancer patients and their loved ones. These are a few specific to lung cancer. Check them out to see if any of them are the right fit for you.
LungLoveLink: This active online community is from the Lung Cancer Alliance. It has forums specifically for different kinds of cancer, life after treatments, alternative medicine and more. There’s also a Caregiver Corner.
Phone Buddy Program from Lung Cancer Alliance: This program matches you with volunteers who have been, or currently are, where you are for one-on-one conversations. The program does its best to match you by cancer type, age, and more and will also try to accommodate any specific requests you have.
Lung Cancer Survivors Support Community: This very active community, hosted on inspire.com, lets you share worries, successes, setbacks and more with a large community that understands. You’ll find discussion topics on each stage of NSCLC, treatment options, alternative medicine, good news and more.
Lung Cancer Support Community: This online community, from LUNGevity Foundation, has more than 2 dozen forums, ranging from general discussions of lung cancer and personal updates to ones related to a specific diagnosis or treatment choice. For the most part, the general topics appear more active (posts within the past day or two when we visited) than the more specific ones.
LUNGevity LifeLine: This program connect lung cancer patients with survivors to provide one-on-one support. Family members and caregivers can also get support from other “co-survivors.”
Lung Connection Community: This community, from the American Lung Association, has different groups for different lung diseases. Find and register for the Living With Lung Cancer group in the drop-down list under Groups in the main headings at the top of the page.
Lung Cancer Forum on CancerCompass: This board appears fairly active, with people sharing their stories, asking questions and offering advice.
If you’re looking for a local support group, the Lung Cancer Alliance lists the ones they know about by state.
For more support options available to people with any kind of cancer diagnosis, take a look at our Cancer Patient Resources page.
Other Resources for Lung Cancer
When you’re ready to dig deeper, check out Lung Cancer Online from the Lung Cancer Alliance. This site offers more than 1,000 links to high-qualify resources. They are also neatly organized into categories so you can easily find more resources related to your specific questions.
Give a Scan is another program from the Lung Cancer Alliance that collects CT scans donated by patients and family members and makes them publicly available to researchers and everyone else. The goal is to try to accelerate research. If you would like to donate your scan(s), this page explains how.
Test Your Home for Radon: One of the things that can increase your risk of getting lung cancer is exposure to radon. This page gives a good explanation of why, how, when and where you should test your home to see if it is safe.
Information for Kids About Lung Cancer
Talking with your kids about your cancer can be harder than dealing with the cancer. You want to protect your children, but it’s also important to prepare them for what is going to be happening during your treatment and beyond.
Lungcancer.org has a guide on Helping Children When a Family Member Has Cancer. It is not specific to lung cancer, and it offers advice on explaining your diagnosis and treatments and answering their questions.
Other resources for kids can be found on our kids’ cancer resources page.
Lung Cancer Caregiver Resources
Caring for someone with lung cancer is stressful, too. And taking care of yourself is important. Much like patients connecting with other patients can help them feel less alone, caregivers connecting with other caregivers can offer each other advice and support.
Caregiver Resource Center on the LUNGevity support community: Less active than the patient forums, but it did have several topics active during the week we visited.
Many of the online communities mentioned in the support section above also includes sections for caregivers. Unfortunately, much like the LUNGevity forum they’re less active than the patient forums.
If we find truly active forums, we’ll list them here. But there are other, more active groups that don’t focus specifically on lung cancer. They’re for caregivers of someone with any cancer diagnosis. We list those on our cancer caregiver resources page.