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Tori Tomalia is a two-time cancer survivor currently living with stage 4 non-small cell lung cancer since May of 2013. Her first cancer experience was childhood osteogenic sarcoma, for which she received chemotherapy and curative surgery, and had been cancer-free for over 20 years prior to the lung cancer diagnosis. Along with cancer, Tori juggles life as a mom of 3 small children, a wife, a theatre artist, writer and lung cancer awareness advocate.
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Finding Your Lung Cancer Community

Cancer is a lonely, confusing experience. Finding others who have walked the path before can be an emotional lifesaver.
PUBLISHED: MARCH 29, 2015
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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

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)

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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