Tomma Hargraves: Choosing to Help Other Patients after Surviving Lung Cancer
After I was diagnosed with stage 3B non-small cell lung cancer, I took part in a clinical trial testing an aggressive approach to treatment. It was a success, and I am a 12-year survivor. My experience led me to train to become a patient lay navigator. I love this volunteer role. By sharing with newly diagnosed patients what I learned through my experience with lung cancer, including how they should fear the tumor, not a trial, and by providing practical and emotional support to them, I am doing something positive and making a difference for others.
My journey with lung cancer began when I felt a little bump on the left side of my neck in October 2006. I was on my way to the beach and didn’t think much about it at the time.
I did point the bump out to my primary care physician at a routine visit a few weeks later and he recommended a biopsy. I knew it must be bad news as soon as he called and asked me to come to the office to discuss the results. I did not want to wait so I asked him to tell me there and then. He told me I had non-small cell lung cancer and that I needed to have a CT scan right away. I was completely shocked. I couldn’t believe it.
The scan showed a tumor in my upper right lung, and tumors in many lymph nodes in my mediastinum and on both sides of my neck. It meant that the cancer was stage 3B.
I knew the survival statistics for patients with lung cancer were not good, so after a short trip to Florida with my husband, I sought opinions from several local cancer centers.
I opted to participate in a clinical trial at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center. I chose this because the trial was testing an aggressive approach to treatment that I felt would give me my best chance for survival. I was also impressed that the oncologist who met with me brought the whole care team, including the radiation oncologist, the pharmacist and the nurse navigator, into the room to meet me.
The clinical trial started with high doses of chemotherapy, then changed to seven weeks of a higher than normal dose of radiation and lower doses of chemotherapy, and ended with several months of treatment with a new targeted therapy called erlotinib (Tarceva). The radiation was the hardest part for me. It caused burns and esophagitis, which prevented me from eating for three weeks, and has left my lungs permanently damaged. But that’s a small price to pay for still being here.
At the end of the nine months of treatment, the oncologist told me that the cancer was gone. I was so full of joy that I hugged him, but I don’t like to say that I’m cured or that my cancer is gone because you never know what will happen. I prefer to say that my cancer is controlled.
In fact, I did have a relapse in my lymph nodes and brain three years later, which chemotherapy and radiation were able to control. Since then, I have had no further treatments for the cancer.
Transitioning back to “normal” life after the nine months of active treatment was difficult, but being in the clinical trial meant that the team at UNC Lineberger kept following my progress. It was good to know that someone was watching me. Even now, I continue to have annual checkups for lung cancer because they help me emotionally.
A long-term effect of my treatment is that I can get pneumonia very easily because of the radiation damage to my lungs. As a result, when I get a cold I take antibiotics to guard against pneumonia. Apart from that, I’m great and I have switched direction from being a survivor to being a patient lay navigator and advocate.
Being a patient lay navigator at UNC Lineberger allows me to give back to the hospital that I credit with saving my life and being part of the team that supports patients who are newly diagnosed with lung cancer is incredibly fulfilling. The best part of this role is that I see the tremendous progress we are making against lung cancer since I was diagnosed almost 13 years ago. The new treatments that we have, which were made possible by cancer research, are giving more and more patients the chance to survive like I did.