How a startling lung cancer diagnosis sparked The White Ribbon Project
Close your eyes. Imagine yourself in your calm and happy place, living your dream. Out of nowhere and without warning, a tsunami engulfs you. You are toppled by this assault and its lasting wake of terror. Your life is forever changed, but you find hope.
Welcome to my world. That’s exactly how it felt when I was diagnosed with lung cancer.
My diagnosis
Since I was a lifelong health enthusiast, health educator and fitness trainer married to a primary care physician with a grown family, we were blindsided by my Stage IIIA inoperable lung cancer diagnosis at the age of 55 in October 2018. Given a grim prognosis by a pulmonologist over the phone, I was told I had four to six months to live and should get my affairs in order—WHAT?!
The scariest part was I had no symptoms. This was an incidental finding that came up while investigating an ovarian cyst. My provider ordered a CT scan of my chest, abdomen and pelvis and the results were shocking: I had a benign ovarian cyst, but they also found a 2.5 centimeter mass in the upper lobe of my left lung and enlarged lymph nodes in between my lungs. How could I have lung cancer? How could it be late stage? I never smoked and lived a squeaky-clean life.
My treatment
My oncologist gave me hope. Although they didn’t detect any actionable biomarkers, I was a candidate for a new immunotherapy with curative intent—an aggressive treatment strategy for people who, like me, were given a formidable diagnosis—that would hopefully result in a cure. I would have to complete chemoradiation first. After three cycles of chemotherapy with 30 radiation treatments, I then got immunotherapy infusions twice a month for one year, which I completed with much success.
More than five years later, I show no evidence of the disease and have lived to see two of our children get married and start families—something that felt unimaginable the day I received that terrible phone call.
My cancer education
My diagnosis kickstarted my education about a misunderstood disease fueled by inaccuracies in media messaging—don’t smoke and you won’t get lung cancer.
I didn’t know lung cancer is the leading cause of cancer deaths among both men and women, responsible for more deaths than breast, colon and prostate cancers combined. If my husband and I, both trained in prevention, didn’t know the statistics and the fact that anyone with lungs can get lung cancer, why should we expect the general population to know?
Lung cancer rates in people who have never smoked are increasing. Other risk factors exist: Secondhand smoke, radon, air pollution, family history and factors we may not even be aware of.
I also wasn’t aware that lung cancer screening exists, but only if you meet specific criteria. Of those who are eligible in the U.S., less than 6% get screened. Why is there no loud promotion of screening for the number one cancer killer? So many facts are not visible. The lack of awareness gnawed at me and staying quiet felt irresponsible.
As my frustration grew from the lack of discussion around lung cancer and the stigma surrounding those who got it, I asked my husband to make a big white lung cancer awareness ribbon out of wood for our front door—a visible scream to my community that I had lung cancer, I wasn’t ashamed of it, and we need to talk about it.
One picture on social media went viral, and before we knew it, we were shipping ribbons to people across U.S. and to 34 countries for distribution to patients, caregivers, medical and science communities and anyone who wanted to shout it from their rooftops, too. We named it “The White Ribbon Project,” which is now a non-profit international grassroots organization working as a team to improve prevention, early detection, research funding, treatments and survivorship for lung cancer.
The White Ribbon Project promotes lung cancer awareness by changing the public perception of the disease. Anyone with lungs can get lung cancer, but no one deserves it. There is a human story behind every diagnosis, and no one should ever feel alone nor judged because their cancer originated in their lungs.
It’s time to erase the stigma of lung cancer—and we can start by shouting it from the rooftops.
Learn more about Heidi, The White Ribbon Project and how you can get a white ribbon of your own.