Cecil L.

Living in Kansas, my life was fairly normal. I worked as a loss prevention supervisor. At home, I was devoted to raising my son, who is also named Cecil. He’s a really good kid and the focus of my life. I spend a lot of time going to his sporting events and supporting him in school.

One night in August 2012, while working the night shift, I noted that my chest was congested. A few weeks later, it wasn’t going away. I saw my primary care doctor, and he prescribed two rounds of antibiotics. After that medicine didn’t help, he ordered a CT scan, which showed a mass in my upper left lung. I was ultimately diagnosed with stage IV lung cancer. I was 55 years old.

I felt overwhelmed when I heard the news. I had lots of questions, and I was scared. It hit my immediate family pretty hard. My mother and sister were devastated, but determined.  The hardest part of all was trying to figure out how to communicate my diagnosis to my son. I took my time to figure out how I was going to tell him because I knew it would really affect him.

I wanted to take care of this right away, and I started treatment locally in Kansas City. I underwent surgery and started chemotherapy. After I completed treatment, I returned for a three-month checkup, and the tests revealed that the cancer had spread to my right lung. My sister asked about genomic testing, and the doctor completed it. However, the results had limited treatment options at that time.

I did not let this depress me or get me down. Rather, I was motivated more than ever. I needed to get through cancer for my son. I wanted to survive, and I was not giving up without a fight. I began searching for more options.

Finding renewed confidence

A friend of mine called me one day and recommended I look into Cancer Treatment Centers of America^® (CTCA)* to get a second opinion. My friend said, “The Lord put it on my heart to tell Cecil that he needed to go to CTCA^®.” I figured it was worth a phone call. Things moved quickly after that.

Within a week, my sister and I went to the CTCA hospital in Tulsa, Oklahoma. Just walking into the center, I got such a positive first impression. I got a sense of hope as soon as I walked through the doors. I felt nervous excitement radiate through me. And later on, when I talked to other patients, they experienced the same feeling and sensation. Everybody's friendly, they greet you warmly, and you just feel secure. I felt like I was in the right place for me. I just had this feeling that good things were going to happen.

I began treatment in September 2013. I met my team of doctors and clinicians, and together, we mapped out a course of treatment. The treatment plan was so detailed, and I was happy to be involved in the decision-making process. It gave me a renewed sense of hope and a different perspective on how things would be in the future. It felt like I had a whole new window of possibilities open up for me. The doctors let me know I had these avenues available. It gave me a renewed sense of confidence and hope.

Genomic testing was ordered in October 2013. This analysis provides information about clinically relevant alterations to help match cancer patients with approved targeted therapies, immunotherapies and clinical trials. They tested for over 240 different mutations.

The test results revealed an ERBB2 mutation with an on-label afatinib recommendation. Afatinib was an emerging new treatment for non-small cell lung cancer patients with ERBB2 mutations. Afatinib was ordered in June 2016. Then, my insurance denied the medication.

Fighting for my life

The precision medicine team at CTCA set up an appeal against the insurance decision. Once again, it was denied. The team set up a peer-to-peer review, and the medication was once again denied. However, we weren’t giving up without a fight. The precision medicine team helped complete paperwork for a patient assistance program. Finally, I was approved through the program, and I started the medication in June 2016. CTCA never stopped fighting for me to get this precision medication.

I was lucky in that I experienced only slight side effects from the treatment. I worked closely with supportive care clinicians for issues that arose. I feel like my quality of life actually improved after coming to CTCA for treatment. I formed a strong relationship with the hospital’s pastoral care team, who would often sit with me and pray, helping to renew my faith.

My sister often came with me to my treatments. My CTCA care team not only cared for me, but also wanted to help my caregiver. She felt supported throughout the process as well. She formed close connections with doctors, patients and other caregivers.   

When I first started coming to CTCA, I was scared. I sat and listened a lot and asked many questions. As time progressed, I got more comfortable with my situation. Today, I am more confident in talking about my cancer journey, and I have a strong desire to help other people in similar situations. I hope my story can help others.

My advice to someone who has been recently diagnosed is that you are in a time-sensitive situation. I would tell that person to immediately seek help. Cancer doesn’t wait for you, so don’t hesitate. I recommend CTCA to anyone who has been diagnosed. CTCA understands the importance of speed to care.

Today, I am still undergoing cancer treatment. I feel strong, and I have improved energy. I even do Zumba. I am enjoying time with family and friends, especially my son.

As difficult as my situation is, I feel there was a blessing in it. A cancer diagnosis caused me to pause and re-evaluate my life. It led me closer to the Lord and taught me to lean on my faith. Although the clouds were dark, I drew strength from God, and he brought me to the light.