Heidi and Pierre Onda founded the White Ribbon Project, an advocacy organization fighting for lung cancer awareness, when they became frustrated by the lack of public support or information about the disease. In a Q&A, the husband and wife discuss Heidi’s lung cancer diagnosis and treatment, and how they’re fighting on behalf of others with this misunderstood cancer.
Please, tell us a little bit about yourselves.
Heidi Onda: I hold a Master of Science degree in Health Education and have been a professional fitness trainer for 17 and a half years. I recently became a lung cancer survivor and advocate.
I am a lifelong health enthusiast. I eat clean, love to workout (strength, core, and cardio), hike, travel, and visit our adult children who live in different parts of the country. I picked up the skill of using a jigsaw to make White Ribbons. When I am not working my day job, I am advocating for lung cancer awareness. On the weekends you can find me in the garage cutting ribbons out of plywood for distribution across the country, to Canada, and overseas.
Pierre Onda: I am a primary care physician having practiced Internal Medicine for the past 26 years. I also hold a Masters of Public Health in Health Education. My other interests include painting, gardening, woodworking, reading, meditation, cycling, cooking, and hiking. I am learning how to be a better caregiver and lung cancer advocate.
Tell us about your own experience with lung cancer, and your thoughts on the information available to you at the time of diagnosis.
HA: At the time of my diagnosis, I had very little information about lung cancer. I was taught from a very young age through the media and my own graduate studies that smoking was the only cause of lung cancer. Don’t smoke, no risk factor for lung cancer was the message. My family and I were stunned with my late stage lung cancer diagnosis, without having symptoms, while investigating an ovarian cyst.
I was told over the phone by a pulmonologist that I had Stage IIIA adenocarcinoma of the lung. I was inoperable, my prognosis was grim, and I should get my affairs in order. After meeting with the oncologist, I was given much more hope. I was a candidate for a recently FDA approved immunotherapy if I responded well to an aggressive course of chemoradiation. After three cycles of chemotherapy and 30 radiation treatments showed significant reduction of the tumor and lymph nodes, I began immunotherapy infusions every other week for a full year, 26 infusions in all. I was considered NED (No Evidence of Disease) in January of 2019, and completed all treatment in January, 2020. As of January 2021, I was still not showing evidence of disease. Currently, I am on surveillance. I am doing well, and I am grateful.
The sad thing is, the only information I was given at diagnosis and throughout treatment was a binder full of potential side effects and horrible things that could happen to me, and an introduction to the palliative care team. This reinforced that there was little hope. I did not get any information about support groups, caregiver support for Pierre, nor any information about lung cancer advocacy groups. I had to find all of that on my own, about 10 months into my diagnosis. Pierre and I felt very alone. This seemed very different as compared to others cancers, as I would sit in waiting rooms finding all kinds of literature and information about other cancers, but absolutely nothing for lung cancer. I felt invisible.
What encouraged you to start the White Ribbon Project?
HA: Lung Cancer Awareness Month is in November. In the spring of 2020, I approached my community cancer center as well as the NCI-CCC in my state with other advocates to find out what they were planning to do for LCAM. For months we were ignored, dismissed, misled, and humiliated by the responses we were getting. As November grew closer without any decent responses or actions, and being aware of all the awareness campaigns going on very loudly for other cancers, my frustration grew. After a particularly hurtful response in October of 2020, I reached my breaking point. I cried and felt powerless and defeated. At that point I cried to Pierre and told him that I wished he could make me a big white ribbon out of wood that I could put on our front door so I could scream to the world — anyone who would walk by our house and see it — that I had lung cancer. I wasn’t ashamed. I wanted to bring awareness that anyone with lungs can get lung cancer, and I needed to start at home. Home, our property, didn’t require permission or going through a cold-hearted bureaucratic process. I could take control back and feel like I had some power back in my life, as I felt stripped of that since the day I was diagnosed.
What is your goal with The White Ribbon Project?
HA: The White Ribbon Project promotes awareness about lung cancer by changing public perception of the disease. Anyone with lungs can get lung cancer.
What are the top things you want people to know regarding lung cancer? Pierre, as a primary care physician, what would you want other doctors who may not specialize in lung health to know?
PA: Anyone with lungs can get lung cancer. There is hope. Research matters and is dependent on funding.
I believe most primary care physicians, like the general public, believe that lung cancer is almost exclusively a disease of people with a history of smoking and that lung cancer in people without a history of smoking is rare enough not to warrant any significant attention. We now have enough evidence to say that this paradigm is so inaccurate that allowing it to persist places a significant number of people at risk. Primary care physicians in particular need to include lung cancer in their differential diagnosis of patients, regardless of smoking history, should they present with certain symptoms.
In addition, many primary care physicians need to be much more aggressive in promoting lung cancer screening to their patients who are eligible for it. Screening rates for lung cancer are abysmally low compared to breast, colon, cervical, and prostate cancer. It’s been almost seven years since lung cancer screening was introduced in national screening guidelines.
Finally, treatment protocols for lung cancer have changed significantly in the past several years and continue to do so. Primary care physicians need to familiarize themselves with these new treatments, understand their potential side effects, and their promise of prolonging the lives of their patients — if not curing them. They need to help their patients understand that a diagnosis of lung cancer at any stage, while very serious, is treatable at every stage.