Hi, my name is Heidi Onda and I was diagnosed with stage three lung cancer in October 2018, six years ago. I am a lifelong health enthusiast, health educator, and fitness trainer. I am married to Pierre, my high school sweetheart, for 38 years. He is a retired primary care physician. We have three adult children who live independently across the United States, and we are now happily grandparents to two little girls, one from my son and daughter-in-law and one from my daughter and son-in-law.
My lung cancer diagnosis was a complete shock. I had no symptoms that would typically indicate lung cancer. I had an ovarian cyst that seemed suspicious due to my age at the time, 55, so my doctor ordered a CT scan of my chest, abdomen, and pelvis to rule out ovarian cancer. What came back was unexpected. The ovary appeared to have a benign cyst, which was unusual at my age, but the scan revealed a mass in the upper lobe of my left lung and enlarged lymph nodes in the middle of my chest.
Further testing followed, including a PET scan, which showed bright activity in those areas. This led to a biopsy, and then a difficult phone call from a pulmonologist I had never met. I was told I had stage three adenocarcinoma of the lung, inoperable due to multi-station lymph node involvement. The only treatment option was chemotherapy and radiation. I was told to get my affairs in order and that I likely had 4 to 6 months to live.
This was shocking for many reasons. I had no smoking history and lived a healthy, active lifestyle. Growing up in the 1970s, I was exposed to secondhand smoke, but I never participated. I felt embarrassed and confused because I had always been health-conscious, and my husband, a primary care physician, was also trained in prevention. Over time, I realized that many people, including myself, did not understand that lung cancer can occur in people without smoking history.
As a health educator, I began to see this as a teachable moment. I understood that if we, as professionals, were not fully aware, the general public likely was not either. I also recognized a gap in public health messaging. Prevention is often framed as avoiding smoking, rather than emphasizing early detection and screening.
Lung cancer screening exists, but only a small percentage of eligible individuals—about 4.5%—are getting screened. This raised concerns about awareness, physician referrals, and overall public health communication. I became passionate about promoting screening and improving awareness across the full spectrum of lung cancer care, from prevention to survivorship.
At first, my mind was overwhelmed. I questioned how I could have late-stage cancer without feeling sick. Instead of remaining in denial, I focused on action. I sought a second opinion and waited for biomarker testing. The results showed no detectable mutations.
Fortunately, research and immunotherapy played a critical role in my treatment. Immunotherapy had recently been approved by the FDA, and my oncologist was aware of it. This treatment offered curative intent. I underwent chemotherapy and radiation, followed by a year of immunotherapy. During this time, I focused on treatment adherence and doing everything possible to improve my chances of recovery.
As time passed, I realized I had not met many others with lung cancer. During the pandemic, virtual meetups allowed me to connect with other patients and advocates. I also noticed younger individuals sharing their stories publicly, while mine remained quiet. This made me feel that staying silent was not responsible.
Over time, I began advocating more actively. In September 2020, I received a message that felt dismissive and disrespectful regarding lung cancer awareness. This moment pushed me to become more vocal. I created a white ribbon symbol to represent lung cancer awareness, and with support from my husband and daughter, it grew into a larger movement.
A simple photo of the ribbon went viral, and soon we were sending ribbons across all 50 states and to 36 countries. What started as a small idea became a global awareness effort.
During treatment, I was informed about potential long-term effects of chest radiation, particularly on the heart. At the time, I focused on surviving the immediate challenges. Follow-up scans over the years were normal, and I returned to teaching fitness classes and leading an active lifestyle.
In June 2024, I experienced unusual symptoms during a walk, including tightness in my throat. At first, it was dismissed as environmental, possibly due to wildfire smoke. However, the symptoms continued intermittently during exercise and later appeared at night, accompanied by jaw and arm discomfort.
Recognizing these symptoms, I sought medical evaluation. An EKG suggested the possibility of a previous heart attack. Additional tests, including blood work, an echocardiogram, and a stress test, were ordered. Although I felt fine during the evaluation, the tests indicated a prior cardiac event.
I was later referred for further testing, and during this process, doctors considered my history of chest radiation. It was determined that this may have contributed to cardiovascular issues. This experience highlighted the importance of long-term monitoring for cancer survivors.
Through advocacy, I have shared my experience with medical professionals, including radiation oncologists. This has led to increased awareness of survivorship care and the need for cardiac monitoring in patients who have undergone chest radiation.
This journey has become a central part of my life. Lung cancer remains the number one cancer killer, yet awareness and screening remain limited. I believe that anyone with lungs can develop lung cancer, and no one deserves this disease.
This work, alongside raising my family, has become my life’s purpose. It is important work that has remained in the shadows for too long. I feel privileged to be part of a growing movement focused on awareness, early detection, and improved care for lung cancer patients and survivors.
