Suzanne Lindley is pictured on the left.
Be Seen, Get Screened's Hero of the Month series highlights the work of inspiring individuals on the front line in the fight against colon cancer. In our latest edition, we talked to Suzanne Lindley, (pictured above, left) to whom Katie Couric refers as the "medical matchmaker."
A colon cancer advocate who has been battling metastic colon cancer for nearly two decades, Suzanne founded patient advocacy organization YES! Beat Liver Tumors, which provides resources, information, support and hope to those who are affected by metastatic cancer.
Be Seen, Get Screened: Can you tell us about your personal experience with colon cancer?
Suzanne Lindley: My journey with stage IV colon cancer began at age 31; nineteen years before I should have even needed a colonoscopy. Our world turned upside down as treatment and reality began to collide.
BSGS: Your cancer journey demonstrates an extraordinary will to live. How do you maintain such an optimistic attitude despite failed treatments, terminal prognoses and other challenges you’ve faced?
Suzanne Lindley: In the beginning, there was little optimism. We grabbed every minute and tried to make it special because I was going to die.
It was a social worker at cancer care who helped me to change my perception of hopelessness and fear. He told me, "There is nothing you can do about how you are going to die, but you have all the power in the world to choose how you will live."
He also told me that hope was mine and that no one could take it away. He sent me a picture of HOPE written in the sand and told me if I began to lose sight of hope to simply look at the picture and it would be right there. At times, I would look at the picture of hope a million times a day.
It was a gradual process of dying from cancer to living fully in spite of it.
BSGS: Tell us about your patient advocacy organization YES! Beat Liver Tumors. How did you come up with the idea?
Suzanne Lindley: Living with cancer that has spread is a challenge. It is most often the spread to the liver that will cause the patient's demise and when YES began there were few places to talk about options and living well in spite of terminal cancer.
I volunteered with several other organizations but did not want to reinvent the wheel and also wanted to ensure that others like me did not feel the same isolation and fear. YES provides resources, information, support and hope to those who are affected by metastatic cancer.
Our awareness campaign this year is called "Gonna BEAT This Thing" and it is bringing voices from around the globe together to show support and create awareness about advanced cancer.
BSGS: Katie Couric refers to you as the “medical matchmaker.” How have your personal experiences with cancer allowed you to help people connect with physicians and explore new treatment plans across the country?
Suzanne Lindley: Without help from others, both organizations and individuals, I would not be alive today. Knowing the importance of support and second, third, and even more opinions has helped me to connect others and pay forward what has been given to me.
BSGS: What are some of the greatest obstacles you’ve faced and most valuable lessons you’ve learned throughout your cancer journey and advocacy experience?
Suzanne Lindley: There have been many obstacles in this now 16 year journey with stage IV colon cancer. In the beginning, even the word colon was only uttered in a hushed whisper. The awareness was not what it is today and neither was the treatment. Only one existed back then.
I was diagnosed at a time when colon cancer research was rampant and was lucky to benefit from that research. I learned from the late, great Kate Murphy who was ACOR list moderator and a Fight Colorectal Cancer co-founder that, "Research saves lives." That is definitely the case with me.
I've learned the importance of having a team on my side and involved in my care. It is imperative to have a medical oncologist, surgical oncologist, radiation oncologist and interventional radiologist review scans and determine treatment steps together.
When my liver tumors began to grow out of control, I exhausted my chemotherapy options and was fortunate to have a liver directed therapy called SIR-Spheres. Though the procedure did not cure me, it did downstage my tumors so that I could receive further treatment.
"There is nothing you can do about how you are going to die, but you have all the power in the world to choose how you will live."
Finally, there is nothing like the support of someone who has been in your shoes. Meeting others, learning from them, and sharing has been a gift that cancer gives. It has also showed me the importance of the patient voice. Our collective stories hopefully paint a picture in favor of and the need for early detection and screening.
BSGS: If you could offer advice to a young person facing a recent colon cancer diagnosis, what would you say?
Suzanne Lindley: Ask questions and discover answers. Seek a treatment team and don't just allow one opinion to determine your treatment decisions. Always surround yourself with support. Hold tight to hope and never, ever give up.
BSGS: In your opinion, why is it important to be educated about colorectal cancer and available screening options?
Suzanne Lindley: My 16 year journey with stage IV colon cancer at the least could have been detected earlier and at best prevented had we only known the importance of family history or had I simply "been aware" of the warning signs. Screening options save lives and keeps others from enduring a journey like mine.
BSGS: Lastly, what is one thing you would like people to take away from your story?
Suzanne Lindley: Be Very simple! Be Seen, Get Screened! On that note, there is a great petition gaining momentum called Never Too Young – Lower the Screening Age for Colorectal Cancer. Check it out and if you like it, sign it!