Be Your Own Advocate

I was told that I had lung cancer over four years ago, it seems so long ago and yet it still feels like yesterday. Since that time I have endured surgery, radiation, chemotherapy, and now currently immunotherapy. I was asked yesterday what would you tell someone who was newly diagnosed. It took me a few minutes to compile a list of things but one stands out the most.

As someone who has traveled the journey, these are my suggestions.

Avoid the internet

Stay away from the internet until you have a better understanding of the medical terminology. You are going to be introduced to a foreign language and I can guarantee you, within a matter of months you will become an expert on what all these terms mean, what "protocol" means, and how to find out about it, and many more. During initial diagnoses, you will have X-rays, scans, biopsies, and possibly many more tests. But as you go through everything you will learn what each thing means and how it pertains to you.

Establish your support team

Be very methodical who you enlist as your support team in the beginning. You want calm people who will help listen to everything your medical team tells you and help you remember those words. You think you'll remember, but you won't. Remember this is life-altering.

Be your own advocate

To me, this is the most important. To help you understand, I have to tell you about my medical team. My pulmonologist, my oncologist, and my primary care physician ALL hug me upon entering the room. They take time to ask me about my family, how did my daughter's wedding go, "show me pictures of the wedding", and then, after finding out how my support team is, they begin to ask me about my daily activities, how I'm feeling and how I'm doing.

This may sound trivial but it is extremely important that you feel the members of your team not only have the medical professionalism and knowledge to treat you, but also realize you are a person and have a family just like they do. Did you see a commercial or read a brochure about a specific treatment that you want to ask your doctor about -- go ahead, you must be comfortable enough to ask and more importantly, you want a medical team that answers your questions. Even if it is not information you want to hear, are they compassionate when speaking with you?

It takes a village

30, 40, 50 years ago, people went to the doctor, barely said hello and did whatever the doctor said. That is not the case anymore. You know your body more than anyone else and you must feel comfortable discussing everything with your physician.

I wish you luck and hope that you find a team as caring and knowledgeable as mine is. I know that I am very lucky and you can be too!

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.