I Have Lung Cancer - Where Do I Start?

I remember the day I was told I had lung cancer.  Well, to be honest, I really don't remember "the day" I was told.  I immediately blanked out into a mysterious place in my brain and it took a bit of time to come out of it.  We all do that.  We have to absorb what has been thrown at us before we can intelligently discuss and make decisions.  The internet age has made it much worse.  A Google search will turn up tens of thousands of websites.

A Starter's Guide to Finding Support

But, from a 4-year survivor, here is a list of my go-to places for accurate and up to date information.

• American Lung Association
• Bonnie J. Addario Lung Cancer Foundation
• Lungevity
• LungCancer.org
• Lung Cancer Alliance
• Lung Cancer Foundation of America
• Lung Cancer Research Foundation

The Role of Facebook Groups

This is just a list to get you started.  There are many organizations on Facebook as well.  Honestly, Facebook was my most comforting place to go if I had a question that I didn't feel warranted a call to my doctor.  I became friends with other survivors within the groups and we all depend on each other.  No one really knows how we feel - not our spouse, child, friends, and family - only another survivor knows exactly how we feel, what is going through our head, and can sometimes offer ways to help us.  Many newly diagnosed people I speak with as a mentor tell me they are afraid to say certain things to their spouse.  These Facebook groups are a great place to ask for suggestions on, "how did you handle _____."

I have developed many lung cancer brothers and sisters over the past four years.  It is an experience I wouldn't trade for the world.   Don't be afraid to join a group and just "lurk" for a bit to see if YOU feel that group would be a good fit for YOU.

Please do not mistake this list and my information for medical advice.  ALL medical advice must come from your medical team, but there are many times when speaking to another survivor is "just what the doctor ordered."  We understand how you are feeling.  We understand how confused you are.  We are here to help.

Attending Patient Conferences

I have also been lucky enough to attend four lung cancer conferences that were for survivors and caregivers.  The people you meet are embedded in your heart and become your family.  Words cannot describe my first conference.  I had felt all alone for the first year and when I walked through the doors of the Lungevity Hope Summit, I immediately felt this is where I should be.  Three hundred people in one room who ALL know how I feel!!  And we share with each other - it is an amazing experience that all newly diagnosed survivors should look into.

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.