In the months following my diagnosis with metastatic lung cancer, I felt so desperately lost and alone. I didn't know a single person with this type of cancer, let alone another young mom. As the fog of shock and denial gradually lifted, I ventured into the online waters of cancer groups in an attempt to find others in this same boat. First, I came across a number of blogs written by other young people with lung cancer, and I hung on every written word. Many of those same people have become dear friends to me now, and heartbreakingly some have been taken by this disease.
If you are newly diagnosed or looking to connect with other lung cancer folks, here are a few groups and organizations that have been very helpful to me in my journey, offering emotional support, companionship, up-to-date research information, and even suggestions for treatments to discuss with my doctor.
LUNGevity is the largest lung cancer non-profit, and has funded over 100 research studies. They also provide patient support through online patient & caregiver forums, an active Facebook group, and the LifeLine program that matches people with similar diagnosis to become phone friends who can call on each other and offer guidence. For face-to-face support, they host Hope Summits throughout the country, where lung cancer survivors can meet in person, hear from experts in the field, and offer peer to peer support.
Why I'm Excited About LUNGevity: I am headed to my very first Hope Summit in May! I will finally get to meet so many of my lung cancer community face to face. There is still time to sign up if you want to come, too.
Bonnie J. Addario Lung Cancer Foundation
Founded by lung cancer survivor Bonnie J. Addario, this non-profit funds an enormous amount of lung cancer research, including the innovative Genomics of Young Lung Cancer study. This first-of-its-kind trial is focused on patients diagnosed with lung cancer under the age of 40, to investigate if there are certain mutations or other similarities within this population. The Lung Cancer Foundation also hosts the Lung Cancer Living Room, a once a month support group and information session that they stream live so that patients around the globe can participate.
Why I Love the Bonnie J. Addario Lung Cancer Foundation: This organization put me in touch with some of the top ROS1 (my driving mutation) researchers for a second opinion that provided insight, information, and hope about my disease.
CancerGRACE (Global Resource for Advancing Cancer Education)
CancerGRACE is a website and online forum where patients can go to discuss treatments, side effects, and new research with other patients and caregivers. What makes CancerGRACE different from other online chat groups is that it is moderated by oncologists. The organization also hosts in-person forums, the most recent being their Immunotherapy Patient Forum in October 2014. This conference featured experts in immunotherapy presenting research and answering patient questions. Videos of the lectures are available online. I attended the Acquired Resistance to EGFR/ALK/ROS1 Inhibitor Forum in September, and I was thrilled to see the top experts in this field discussing their research and answering questions from a room full of patients being kept alive by their discoveries. Remarkable stuff.
What Make CancerGRACE special: It is run by leaders in the field, so they are able to provide accurate, timely information to patients.
LCSM (Lung Cancer Social Media)
For the twitter-savvy folks, LCSM is just the thing for you. This is primarily a twitter-based group that communicates with the hashtag #LCSM, sharing research news, personal stories, and support. Every other Thursday they host a tweetchat focused on a specific lung cancer related topic, and spend one hour in a fast and fun discussion. LCSM also manages a website that includes lung cancer facts, transcripts of past tweetchats, and a list of lung cancer blogs, something that was vital in getting me through the early months following diagnosis. I love the immediacy of blogs, the way stories are told in the moment that they happen. Blogs tend to be more raw and honest that other writing, and I appreciate that immensely.
Why You Should Check Out LCSM: Strange as it may sound, I joined Twitter solely so that I could participate in the LCSM tweetchats. They are fun and informative, and there is a great sense of community around LCSM.
Do you know of other good cancer resources? Post them below!
Originally posted at: www.curetoday.com/community/tori-tomalia/2015/03/finding-your-lung-cancer-community