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Erase the Lung Cancer Stigma

Protect Environmental partnered with Breath of Hope KY to participate in the WHO Health for All Film Festival, submitting our project to the “Better Health and Well-Being” category. Our project focuses on the story of radon and the lung cancer stigma. By raising awareness that anyone with lungs can get lung cancer and encouraging people to test for radon, we believe we are advocating for better health and well-being for all. We are excited to have been a part of this annual World Health Organization event alongside over 1200 other film submissions from 110 countries. 

Radon doesn’t discriminate.

Radon – a naturally occurring radioactive gas. Many people are not aware that they have been exposed to radon because it is not something you can see, taste, or smell. Without these warning signs, radon often goes undetected. The US Environmental Protection Agency reports that more than 21,000 Americans die each year from radon induced lung cancer.

As the leading cause of lung cancer among non-smokers, radon should be tested for, and mitigated if needed, in order to prevent exposure. Unfortunately, not many people know that radon exists or that it is a serious environmental health concern.

Anyone with lungs can get lung cancer.

What is the lung cancer stigma? It is the generalization and assumption that someone who is diagnosed with lung cancer must have smoked or done something to have caused their diagnosis. The reality is that anyone with lungs can develop lung cancer, not just those who smoke. In fact, there are many different causes, radon being the second cause overall and the number one cause among non-smokers.

Erasing the lung cancer stigma will take greater awareness and education. The Better Health and Well-Being category made the most sense for our project as our goal is to raise awareness and, ultimately, reduce the number of radon-induced lung cancer incidents and deaths starting here in Kentucky and beyond.

Radon is a critical environmental health risk that demands continued recognition and improved understanding to protect people everywhere from exposure. With our film contribution, we want to educate the public and encourage action against radon gas in the places we live, work, and learn.

We worked with Lindi Campbell, Leah Phillips, and Chasity Harney of Breath of Hope Kentucky, who shared their stories in this project. All three women are lung cancer survivors and believe that radon exposure was the likely cause of their diagnoses. These women lived a healthy lifestyle, never smoked, and certainly never thought they would be diagnosed with this life-threatening disease. 

Take Action

Our message is simple. Anyone with lungs can get lung cancer and radon could be the cause. Unfortunately, lung cancer has been defined as a smoker’s disease. Consequently, this stigma perpetuates a lack of awareness and often prevents early detection among non-smokers. 

Naturally occurring radon gas can be found anywhere around the world. It is a worldwide environmental hazard that causes over 21,000 deaths here in the U.S. alone. Exposure to radon is preventable. Testing is the only way to know if elevated levels of radon are in the places you live, work, or learn. 

Take action against radon! Test your home.

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Leah Phillips’ Lung Cancer Survivor Story

I have lived in Louisville, Kentucky most of my life. For the last 10 years, I made managing my health a priority. I never smoked a day in my life. I exercise most days. I eat right. I have a yearly physical, mammogram, blood work, wear sunscreen, and basically do my best to be as healthy as possible. I am a busy mom to 3 children and loving my life and, bam…I am hit with this most unlikely diagnosis.

My journey with lung cancer began like many other stories I have read…with a misdiagnosis. A persistent cough in October 2019 led to a chest x-ray and an eventual diagnosis of pneumonia.  After 2 rounds of antibiotics that were not effective, doctors ordered a chest CT scan and diagnosed me with Antibiotic Resistant Pneumonia.  I was admitted to the hospital with 2 IV antibiotics and a bronchoscopy was performed by a Pulmonologist and told the results were “normal.” After a 5 day stay, I was discharged from the hospital to recover.  

Time passed but my cough was still hanging around and I still just wasn’t feeling myself. I knew something wasn’t right.  Two weeks after returning home from the hospital I went back to my Primary Care Physician with worsening side pain. I received another chest X-ray, followed by a chest CT scan that showed lesions on my spine.  I was once again admitted to the hospital where I had a bone biopsy, a brain MRI, a chest tube inserted, and another bronchoscopy procedure.  

I spent 8 days in a hospital bed and test results revealed I had stage IV adenocarcinoma lung cancer. It was one week before Christmas and I was only 43 years old. To say this was a shock, is putting it lightly! Molecular testing results showed I have the EGFR exon 19 deletion mutation. EGFR mutations are most common in female nonsmokers with adenocarcinoma like me. The mutation can cause cells to grow out of control and lead to cancer as it did in my case.

On December 30th I started a targeted therapy drug called Tagrisso known to show successful results in slowing down, reversing, and even eliminating some of the cancer due to this mutation. It is not a cure, as there is currently no cure for stage 4 lung cancer, but it is the best line of treatment for my type of mutation and I am fortunate to have access to this line of targeted treatment. It is not without its share of side effects that are sometimes challenging to deal with, but I know this little pill I take every day is saving my life. However, it is a constant reminder that I have cancer.

Since January 2, 2020, I have been traveling back and forth between my Oncologist in Louisville and Oncologist Dr. Horn at Vanderbilt who is an expert in the type of cancer I have.

The second leading cause of lung cancer is exposure to radon gas and Dr. Horn believes this is most likely the cause of my lung cancer since I have never smoked. Looking back, we did have slightly elevated radon at our house we moved out of 3 years prior to my diagnosis, but I cannot pinpoint any other times I may have been exposed. It is important that people understand the danger of this radioactive gas and have their homes tested for radon. I never in a million years would have expected to receive this diagnosis and if I can help others understand that anyone can get lung cancer, I want to be able to generate that awareness with my story.

I am fighting, I am remaining positive, and I am living my best life one day at a time.

Leah is a part of the organization, Breath of Hope KY. Learn more about this organization.

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Chasity Harney’s Lung Cancer Survivor Story

I was born and raised in Kentucky where I currently live with my husband and our three children.  Never in a million years would I have believed I could get lung cancer because there is no history of the disease in my family and I have never smoked.

One day, while teaching at my school, I had a sharp pain in my chest radiating around to my back that would not go away. I was concerned enough to see my doctor the next day and was relieved when she made the decision to order a CT scan. Thankfully, that one occurrence alarmed me enough to see my doctor right away because I had not experienced any other symptoms and I never felt that original pain again.

As a result of the images on the chest scan and some additional tests, on October 9, 2018, I was diagnosed with stage 3c adenocarcinoma NSCLC just two weeks shy of my 41st birthday. I had 2 tumors in my upper left lobe and 11 lymph nodes that were cancerous.  Initially, I felt numb when we first heard this news. I hurt for my husband and my 3 children and experienced lots of fear not knowing what my future would look like.

Shortly after my diagnosis, we received the news that I tested positive for the EGFR mutation. I soon learned that having this mutation made me a candidate for targeted therapy. I had six weeks of chemo, 30 rounds of radiation, a lobectomy to remove the upper lobe of my left lung, a wedge resection to remove a nodule in the bottom left lobe, 5 pinpoint radiation treatments on my left and right lung, and currently, I am on the targeted therapy pill Tagrisso (80) mg. Throughout this process, I experienced what I would describe as a feeling similar to grief.  I mourned for my old life…before the cancer. As a family, we were lost.

Over time as I healed from the initial surgery and have had a chance to process our new reality, I realized I wanted to do more to raise awareness about this disease. I hope to help others understand that lung cancer is not a smoker’s disease, it can happen to anyone, even if you have never smoked.  I also hope by sharing my story people who read this will listen to their body and seek medical attention when something doesn’t seem right. You never know when your body’s pain or discomfort is an underlying sign of something more serious.

Kentucky may rank # 1 in lung cancer cases and deaths, but don’t be so quick to assume it is because of smoking.  My story is proof that if you have lungs…you can get lung cancer. I can’t say for certain what caused the damage in my lungs to develop into cancer but after I was diagnosed, we had our home tested for radon. We made the decision to put in a mitigation system when the radon readings were 8.0 pCi/L, twice the measurement of what is considered a health risk.  I was also exposed to a lot of dust and particles in the air when the school I taught in for 17 years was torn down and the air of our new school was temporarily filled with the overflow of unclean air.

I would advise anyone who is newly diagnosed to try and stay calm and don’t panic. It’s important not to rush into any treatment before seeking a second or even a third opinion. I was eager to get treatment started so I initially did not get a second opinion. I first did chemo and radiation close to home then went to The James Center in Columbus Ohio to a lung specialist and thoracic surgeon. I am currently still being treated by those same doctors at The James Center in Columbus.  If I had to do it over, I believe I would have sought out a second opinion before rushing into treatment.

A cancer diagnosis is devastating. My whole entire family has learned never to take one day for granted. We live in the present, not looking at the past or future. God continues to give me strength and endurance daily to be the wife and mom I need to be.

Chasity is a part of the organization, Breath of Hope KY. Learn more about the organization.

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Lindi Campbell’s Lung Cancer Survivor Story

In December 2015, I was only 51 when a spot was discovered on the lower lobe of my right lung. I have never used tobacco products, was a very healthy eater and regular exerciser. The nodule was found initially on a routine x-ray by my Primary Care Physician. A CT scan, a PET scan, and numerous follow-up CT scans over a period of 18 months showed some growth, but the reason for the growth was still inconclusive. Lung cancer seemed out of the realm of possibility due to my health history.

When the nodule reached the size of 2.4 cm a biopsy was scheduled to determine if the spot was cancerous. Initially, much to my relief, the results came back showing no signs of cancer. We would later learn that biopsies do not always rule out cancer. After treating the growth in my lung over several months for a possible fungus with no success, I was advised to have it removed without delay and surgery was immediately scheduled within weeks.

The firm advice to proceed with surgery most likely is the key factor in catching it before it had spread. No one could fathom that it would be cancer. A wedge resection surgery was scheduled in December 2017 to remove the unidentified growth. However, during surgery, pathology revealed cancer.

A thoracotomy was performed immediately to remove two lobes of my right lung to ensure all of the cancer was gone. The final pathology report indicated two types of cancer, Adenocarcinoma and Squamous cell carcinoma. This rare form takes on a name of its own, Adenosquamous Carcinoma. According to the American Journal of Clinical Pathology, this type of cancer exists in 0.4% to 4% of cases. My cancer, although very rare, had not spread to the lymph nodes and was stage 1. My survival prognosis was considered to be very good. Unfortunately, only 16% of people will be diagnosed in the earliest stages like me, when the disease is most treatable.

After a year and a half of clean scans post-surgery, a few new spots began to appear in my left lung. We continued to follow the growth of these nodules until one in the lower portion of the lung had grown enough (8 mm) to warrant removal for further testing.  In May 2020 a wedge resection was scheduled to examine the growth. It too was cancer. Molecular testing of the tissue revealed I have a genetic mutation called EGFR exon 19 deletion that is driving the cancer in my lungs. I am now on a targeted therapy drug called Osemertinib to intercept the work of the mutation and help prevent future recurrences. I will be on this medicine until it stops working or until there is a better option. Our hope is the cancer does not ever return or spread outside of my lungs. I am very grateful for my health at this time and for the hope research and medicine provide lung cancer survivors, but there is still so much work to be done to increase survival statistics of this number one cancer killer.

Learn about Lindi’s organization, Breath of Hope KY.