In October of 2021, at the age of 35 years old, with a 4- and 2-year-old at home, I was diagnosed with stage IV NSCLC. It was a shock to everyone - me, my family and friends, my doctor, and even the pulmonologist that did my lung biopsy. I had always been a health-conscious, fit individual. I didn't have exposures or risk factors for lung cancer. It didn't make sense. This is my story.
In February of 2021, about a year into the COVID-19 pandemic, I started to have a dry cough. It persisted for several weeks. After many negative COVID tests, I went to my PCP who thought that maybe I had early spring allergies. I was started on an antihistamine and steroid nasal spray. After a month of being treated for allergies with no improvement, I went back. Around this time, I began having some shortness of breath with exercise and my voice became hoarse. This time, he thought it could be new onset asthma so I was instructed to use an inhaler. Another month with another new treatment went by without improvement. I went back to my PCP who told me that the top 3 causes of non-productive cough are allergies, asthma, and acid reflux. Since treating me for allergies and asthma didn't make any difference in my symptoms but I wasn't experiencing any of the traditional symptoms of reflux, I was diagnosed with silent GERD and began treatment with a PPI. As a precaution, I also had a chest x-ray. The x-ray came back normal. I took the PPI for 6 weeks with no difference in my symptoms. By that point I had totally lost my voice. My PCP referred me to an ENT who scheduled me for a scope to look at my throat and vocal cords. Between the time that I got the referral to when I actually had my appointment with the ENT, deep breathing became uncomfortable and I could not lie down flat to sleep without having a coughing fit. I also began having some mild pain on the right side of my ribs which I thought must have been some minor injury from one of my HIIT workouts.
During my ENT appointment, they discovered that my left vocal fold was completely paralyzed, which explained my lack of voice. I remember being relieved that there was finally some explanation for one of my symptoms! I was scheduled for a head, neck, and chest CT as part of the normal procedure for working up the cause of vocal fold paralysis. I was told that the scans only show something in about 5% of patients but were needed to rule out any 'lumps and bumps'. During those 2 months between the ENT appointment and my CT scans, my shortness of breath got worse. It was too painful to take a deep breath so I just stopped trying. I was no longer able to work out, even taking my dog for a walk was too much some days. My rib pain slowly became worse and worse to the point where I woke up in the middle of one night feeling like I was being stabbed, or like my ribs were on fire from the inside. At urgent care, I received an x-ray which showed no rib fractures, so I was diagnosed with costochondritis which they thought was due to my continued coughing. At this point, the pain kept me from doing basic things like putting on a shirt on by myself, wiping down the kitchen counter, drinking from a glass using my right arm, picking up my kids. I had to communicate, even with my young kids, via the accessibility feature on my phone that would read out what I typed.
Then I had my scans. Two days later, I was told that my chest CT showed "innumerable pulmonary nodules" and that the radiologist had a suspicion for sarcoidosis or some type of fungal infection. She got me scheduled for a lung biopsy 2 weeks later. Right before performing the biopsy, the pulmonologist was 95% sure that he was going to find sarcoidosis. It was the most likely fit for my symptoms, my history, and my age. While I was overwhelmed and very anxious to figure out what was going on so that I could start treating it, I had read up on sarcoidosis and was feeling optimistic that I would get better.
That day I received the devastating diagnosis of advanced cancer. It turns out that they didn't even biopsy any of my lung tissue because on their way in they ran into multiple lymph nodes that were definitively cancerous. They thought maybe it was lung cancer but we'd have to wait for testing to come back on the biopsy samples to find out. Over the next 3 weeks, I sequentially found out that I had adenocarcinoma, then non-small cell lung cancer. I had a PET scan which showed metastases to my brain, ribs, spine, spleen, adrenal glands, and several lymph nodes throughout my chest and abdomen. The cancer was everywhere! I knew this was bad. I was terrified! With each new result, came more waiting for the answer that would actually be able to guide my treatment. I googled median survival for metastatic lung cancer - 14 months! Was I going to die before my kids would even remember me? Finally, a blood test and the finalized FISH pathology on my biopsy sample showed ALK gene rearrangement which meant that I had ALK positive lung cancer.
I felt so devastatingly helpless and filled with dread during the 3 weeks between my biopsy and the final results that showed the ALK mutation. I decided to get radiation to my brain met as well as palliative radiation to the mets in my ribs so that I could be treating the cancer somehow, doing something to try and stop its invasion of my body. I started an oral targeted therapy that specifically treats ALK positive cancer. While I was grateful that it wouldn't take out my immune system or make my hair fall out, it was hard on my body. I experienced intense muscle aches and swelling in my legs. After many months, I experienced anemia and electrolyte imbalances as well as weird skin things and sun sensitivity.
Knock on wood, that same targeted therapy has been working well for me for over 2 years now. Slowly with time, my symptoms have mostly resolved. I can take a deep breath again, I can sleep flat again, I can talk again, and my rib pain is mild these days. My body is not the same as it was before I was diagnosed, but my body is still strong and amazing. It was a struggle for me to learn my body's new limitations. Exercise is now walking for me. Some days it takes all my energy to get out of bed. It was a struggle for me to decide to and then tell my kids that I have lung cancer. It's a struggle not to freak out every time I cough or feel something different or new in my body. Fears surface when I try to plan for the future...will I be well enough to go to this wedding next year, should I plan that dream vacation two summers from now, will I get to see my kids finish elementary school? I have scans and blood work then see my oncologist every 3 months. I focus a lot on my mental and spiritual health. I try to take things one step at a time. In addition to my oncologist, a nutritionist, and a specially trained massage therapist, I also see a psychotherapist too and occasionally an acupuncturist. I have wonderfully supportive family and friends. I have worse days and I have better days.
While lung cancer does not define me, it is a part of me - just like being a mom, a wife, a daughter, a pharmacist, etc. is a part of me. My oral targeted therapy is not a cure, one day it will stop working. I just have to keep hoping and praying that new treatments keep becoming available.
Professionally, I am a clinical pharmacist with a specialty in adult internal medicine. At the time of diagnosis, I thought to myself but I've never smoked! How can this be happening? I've had countless nurses read my chart, see lung cancer, and immediately ask if I was a smoker. Lung cancer was not even considered by my PCP until my CT results came back. There is a false narrative out in the world, even in medical communities, that if someone has lung cancer, they were probably a smoker. This just is NOT true! There is such an unfortunate stigma surrounding lung cancer. It's time to spread the word that ANYONE WITH LUNGS can get lung cancer. I didn't know this myself before my diagnosis but there are so many different types of lung cancer. ALK positive lung cancer is only associated with 3-5% of NSCLC. We do not yet know what causes this rearrangement. There are many other gene mutations associated with NSCLC - KRAS, EGFR, and MET, just to name a few.
In the three years prior to my cancer diagnosis, I had been pregnant and then breastfeeding so my weight fluctuated significantly, my sleep schedule was extremely disrupted, my body was frequently changing, and I was trying to adjust to having a toddler and a new baby while working full time. Looking back, my weight did fall to about 5 pounds less than my pre-pregnancy weight and I was exhausted all the time. But I was trying to get back in better shape and in a tiring season of life, so during that time weight loss and fatigue didn't register on my radar as being reasons to seek medical attention.
Lung cancer has no specific symptoms. Dozens of other diseases and temporary conditions can cause cough, shortness of breath, and fatigue. Since our lungs have very few pain receptors, the primary tumors often cause no symptoms or these very non-specific symptoms that don't indicate that lung cancer is likely. Which means, like me, tens of thousands of patients each year don't get diagnosed until they already have advanced stage disease.
The death toll of lung cancer is devastating. More people die of lung cancer each year than any other type of cancer. And it's not even close! According to the American Cancer Society, it is estimated that over 125,000 people will die from lung and bronchus cancer in 2024. They also estimate that over 230,000 new cases of lung and bronchus cancer will be diagnosed this year. This could be your parent, your friend, your child, or even you. People with lung cancer need help so that we can stay a part of your life.
I am advocating to raise awareness that lung cancer can affect anyone and that more research equals more life. I am advocating for better education for the public and for medical providers, better coverage of lung cancer diagnostic testing from healthcare payers, more funding to support lung cancer research, and more support for patients living with lung cancer.
Thank you for reading my story!