Here’s a list of my top (in no particular order) resources for lung cancer patients. In this post I offer some reputable, reliable sources of information and give pointers for when you are browsing these websites. This list is non-exhaustive: these organizations are a great place to start.
“The American Lung Association is saving lives by improving lung health and preventing lung disease. We were founded over 115 years ago by a group of volunteers dedicated to ending the lung health threat of our time: tuberculosis. With TB largely controlled in the United States, we have extended that mission to other respiratory diseases. And thanks to our donors, volunteers, program and event participants, and staff, we are America’s trusted source for lung health education, lung disease research, support, programs, services and advocacy. When you can’t breathe, nothing else matters®.”
Thoughts: The ALA is an amazing, comprehensive resource for those whose lives have been affected by lung disease. Because the ALA encompasses lung disease and not solely lung cancer, the breadth of information can be overwhelming. However, there are condensed articles with essential information such as 10 Tips to Protect Yourself from Unhealthy Air or Warning Signs of Lung Disease. The lung cancer repository is also impressively thorough. Anyone can take the Lung Cancer Risk Quiz, which is a tool to help measure your individual risk for lung cancer and see if you should get screened. If you have a question about lung disease, the ALA is sure to have you covered: if the answer isn’t in an article, submit your question here!
“LCFA’s mission is the improvement in survivorship of lung cancer patients through the funding of transformative science. While raising funds to support lung cancer research, LCFA will raise the public’s awareness and serve as a resource for patients or anyone seeking answers, hope, and access to updated treatment information, scientific investigation, and clinical trials.”
Thoughts: The LCFA is producing quality research and resources on how to live with lung cancer. It has a tool called Antidote Match which helps people match and find clinical trials within a minute. According to the LCFA, Antidote Match is beneficial for the following reasons:
- You may get a new treatment for your specific lung cancer before it is available to everyone.
- Clinical trials allow you to play a more active role in your own health care.
- Clinical Trial providers may provide you with medical care and more frequent health check-ups as part of your treatment.
- You might be “paying it forward.” Helping others get better treatment for their health problems in the future.
There are two podcasts the LCFA hosts: The First 7 Days which helps to answer the question: “I have lung cancer, now what?” and Hope With Answers which covers a variety of issues such as stigma around lung cancer, getting a second opinion, current research, and much more.
“Founded by patients and survivors, GO2 Foundation for Lung Cancer, transforms survivorship as the world’s leading organization dedicated to saving, extending, and improving the lives of those vulnerable, at risk, and diagnosed with lung cancer. We work to change the reality of living with lung cancer by ending stigma, increasing public and private research funding, and ensuring access to care.”
Thoughts: The GO2 Foundation for Lung Cancer focuses primarily on equipping patients with knowledge about lung cancer and transforming that into improved self-advocacy. Along with funding research, the GO2 Foundation for Lung Cancer provides many resources on the next steps after a diagnosis. I recommend looking through the What is Lung Cancer page which encompasses many facets of lung cancer, ranging from symptoms to the types of lung cancers to coping with a diagnosis. The Lung Cancer Living Room, another valuable service the GO2 Foundation for Lung Cancer has on their website, is a monthly series where physicians, specialists, and researchers give presentations and talks on lung cancer. Definitely check it out!
“LUNGevity is changing outcomes for people with lung cancer through research, education, and support. We are dedicated to funding scientific research because the link between research spending and improved survival is clear. Our strategic investment in both early detection and therapeutics will help people live better with lung cancer and dramatically improve on the current 19% five-year survival rate.”
Thoughts: LUNGevity is similar to the GO2 Foundation for Lung Cancer in the sense that it “seeks to empower patients to be active decision makers in their treatment process.” Where LUNGevity specializes in is building communities of support through online peer-to-peer support and in-person survivorship programs. LUNGevity also funds research through grants to expand the field of understanding on lung cancer. According to the LUNGevity website, they engage with public policy issues to help lung cancer patients by:
- Ensuring the patient voice is incorporated into the development of relevant policy, treatments, and research protocols.
- Streamlining the clinical trial process and making it more accessible to patients
- Ensuring biomarker testing is available to all patients diagnosed with non-small cell lung cancer
“The mission of the Lung Cancer Research Foundation (LCRF) is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment and cure of lung cancer. Our vision is a world free of lung cancer.”
Thoughts: The Lung Cancer Research Foundation, while mainly operates in the world of research, also publishes many resources and education tools. They offer a free printed booklet that covers the basics about lung cancer and how it’s treated. It can be ordered in physical form or downloaded off the website in English or Spanish. Some additional free materials are available include a biomarker testing for cancer brochure, understanding small cell or squamous cell lung cancer booklets, and more. I recommend taking advantage of this extremely educational and informative resource by browsing their free educational resources.
Let us know your go-to websites for accurate and helpful information about lung cancer in the comments!