As many of you might know, my name is Rachele Thompson, and for the last 11 years, I have worked as the Marketing Manager for Growing Up Chico Magazine. What you may not know is that lung cancer has directly impacted my life. I am living with Stage IV ALK+ Non-Small Cell Adenocarcinoma Lung Cancer, and in honor of November being Lung Cancer Awareness Month, I felt compelled to share my story to help bring awareness and education to one of the most misunderstood cancers out there.
My journey began amidst the global pandemic over the summer months of 2020. One day, after mowing the lawn, I could not catch my breath and experienced a terrible coughing fit, which had never happened to me before.
Thinking back, I had noticed that I had felt a little winded when I was working in the yard and walking my dog, but I had not thought much of it until this episode. In fear that I had caught COVID19, I got tested, but upon a negative result, I was sent to a pulmonologist for further testing and imaging. Little did I know that my world was about to be turned upside down.
After an agonizing week of waiting, my doctor called and told me the results revealed an aggressive lung cancer. Scans revealed a 2 x 1 in. tumor in my chest and that my left lung was collapsed due to surrounding fluid. Further tests revealed that the cancer had spread to my spine, lymph nodes, and left lung. Not knowing what this meant or what treatments were available to stop the spread, I was hopeful when I was referred to a top oncologist who could help me uncover the type of cancer I had and what caused it.
Another few weeks went by, following more tests, before I learned that I had Stage IV Non-Small Cell Adenocarcinoma. Intensive treatment started immediately while I awaited further biomarker testing to reveal what was driving my cancer since it was not common for someone my age with no known risk factors. Through this specialized testing, it was discovered that I have a gene mutation called ALK+ (anaplastic lymphoma kinase positive). ALK+ is what is causing the uncontrolled cell replication in the form of cancer. According to Alkpostive.org, this type of lung cancer occurs in only an approximate 5% of patients, but is more prevalent in younger adults, occurring in 30% of lung cancer patients diagnosed under the age of 40. ALK+ is not thought to be hereditary, and there is no known correlation between it and any environmental toxins, including smoking. Unfortunately, scientists do not know why the rearrangement of the gene happens, but with broadening awareness, support, and research there is HOPE!
November is Lung Cancer Awareness Month, and the message is simple – anyone with lungs can get lung cancer. Although lung cancer is one of the most endorsed in its awareness, the message is marred by the stigma that lung cancer is a “smoker’s disease” brought upon through lifestyle choices. The frightening reality is that lung cancer is becoming more prevalent amongst those who have never smoked.
While smoking is still the single greatest cause of lung cancer, there are other, less known factors that can cause lung cancer, these include exposure to radon, air pollution, and asbestos as well as having a family history or a gene mutation. Worldwide, over 600,000 women die of lung cancer each year. Currently, 1 in 17 women will develop lung cancer in their lifetime, and the numbers continue to grow. In 2021, an estimated 62,470 women will die of lung cancer in the US alone; this is more than breast, ovarian, and cervical cancer combined.
Lung cancer is often referred to as a “silent killer” because symptoms are not typically predominant during the early stages when surgery and/or treatments can be effective. Further screening recommendations apply only to current and former smokers. Sadly, the proportion of never-smokers being diagnosed is trending upwards. Health experts are working to uncover how never smokers disease differs from that of smokers and whether the screening guidelines need revision. Just another reason why funding and research matters!
In 2020, The White Ribbon Project was founded to promote awareness about lung cancer by working towards changing the public perception of the disease. The message – anyone with lungs can get lung cancer! Patients and survivors from across the country are coming together to advocate to make sure no one walks this journey alone or in shame that sometimes arises from the stigma of having lung cancer. Heidi Nafman-Onda, The White Ribbon Project founder, a lung cancer survivor, and advocate (along with her husband Pierre) have been creating plywood ribbons, hand painting them and have been distributing them to patients, advocates, doctors, hospitals all over the world over the past year. Her movement is building momentum and awareness and is bringing hope to people like myself and my survivor friends I have made along the way!
In September of 2021, I had the honor of meeting Heidi and Pierre at the first California White Ribbon build event held at Woodland Bible Church. Also in attendance was Chris Draft, a former NFL linebacker who lost his wife, Keasha, about ten years ago to lung cancer. Chris is a fierce advocate for lung cancer patients, bringing awareness to the disease and making sure everyone feels supported and knows that they will not walk this journey alone. Through these leaders, I have learned that every voice matters, even mine.
My goal in writing this article is to promote awareness. Listen to your body. If something doesn’t feel right, do not hesitate to get it checked out by your doctor. Don’t take “no” for an answer when it comes to your healthcare. Even if something doesn’t fit the statistics, it doesn’t mean you should be denied further testing. Keep pushing for answers – you are worth it!
Want to get involved in the fight against lung cancer? Check out LUNGevity – a nonprofit working to improve how people are diagnosed with, navigate and live life with lung cancer by working strategically with regulators, legislators, policymakers and other advocates.
In honor of Lung Cancer Awareness Month, a fundraiser has been set up to raise money for research. To donate, please visit: https://alkpositive.kindful.com/mission-2021/team-rachele.