My name is Julie Swedberg, and my lung cancer story begins in the spring of 2016. I was 41 years old and working as a chief financial officer of a private high school in the Twin Cities. I was enjoying life with my husband Eric and our two children, Owen and Charlie. As with every spring, my seasonal allergies were starting to act up, but that year I had developed a cough in addition to watery eyes and a runny nose. At first I chalked it up to my allergies, but when I didn’t get any relief from my allergy pills, I figured I would go see an urgent care doctor to see whether there was anything else going on.
At my appointment, the urgent care provider decided to do an x-ray of my lungs. The x-ray surprisingly showed a spot on my lung, which the doctor had diagnosed as pneumonia. She gave me a prescription for some strong antibiotics and I was on my way home. I was so relieved that I would finally get a break from the incessant coughing! Fast forward to a few weeks later. I had zero relief from the antibiotics, and I frustratingly went back to my primary care doctor to follow up. I remember the conversation vividly, “Julie, you need to give your body time to recover. Pneumonia can take up to 8 weeks to clear. Give it some time.” He sent me on my way with an inhaler and the belief that I just needed to give it more time. A few weeks later, at my wits end, I called my doctor and begged to be seen again. My cough was literally non-stop. I was desperate for relief. I begged for a CT scan, which the doctor finally approved. The next morning I received the call that no one wants to hear. I was diagnosed with Stage IV adenocarcinoma with the EGFR mutation. I had cancer in both lungs, metastasis in my breast bone, and cancer in my lymph nodes. I was truly devastated. I believed the stigma that only smokers can get lung cancer. I was so uneducated about lung cancer. I had no idea of the actual statistics!
The fact that I was diagnosed at Stage IV stunned me. My only symptom was my persistent cough. My mother had been diagnosed with stage IV kidney cancer when I was 22, and she lived for about 3 months after her diagnosis. I was convinced that was going to be my path as well. Eric and I quickly hired an attorney to get all of our legal affairs in order, convinced that I wouldn’t be around in another 6 months.
Thankfully, I have been able to LIVE with lung cancer since 2016 through amazing advances in research and treatment options! Over the past 4 years, I’ve had part of my lung removed; had a tumor in my leg removed (and a metal rod installed to prevent breakage); radiation; three separate lines of TKI treatments; and I’m currently on a phase one clinical trial that targets my EGFR and MET amplification within my lung cancer. I am doing amazing on the clinical trial, and I feel so lucky to be able to participate and be a critical part of future treatment options for patients!
After the initial shock of my diagnosis, I went into education mode. I reached out to a local lung cancer organization, A Breath of Hope Lung Foundation, and got myself involved with advocacy. I figured that, if I was stunned by my diagnosis and uneducated about lung cancer, there are many others out there that I could help. A Breath of Hope nominated me to participate as a consumer reviewer for the Lung Cancer Research Program through the Department of Defense (DoD). I was both honored and a little intimidated, but the experience has been amazing and incredibly fulfilling. I have been so impressed how seriously all of the scientists and physicians, as well as the DoD, uses the patient’s perspective and input when analyzing these grant proposals. After all, the patient is the ultimate expert! I have felt empowered, enlightened, and engaged through my participation on these panels. Reading and providing input on potential diagnostic tools and treatment options has provided me with such hope for the future treatment of lung cancer! I hope to be around to see some of the funded grants become reality for patients around the world!
Last updated Wednesday, November 4, 2020