13 Years and Counting

Diagnosed with stage 4 (IV) lung cancer after years of recurrent bronchitis, Debbie was initially told she only had 1-2 years to live. Despite this ominous diagnosis, she got second opinions and discovered she had the BRAF mutation which meant she could receive targeted therapy in a clinical trial, but before that, she underwent many rounds of chemotherapy and radiation. Thanks to this aggressive treatment, Debbie has survived over 13 years. Her experience has enabled her to move from a place of fear to one of resilience and she is a beacon of hope for others facing lung cancer. Read her story below.

My diagnosis

For as long as I can remember, I have had bronchitis every single year. In 2013, I was 43 years old, went to the doctor for bronchitis, and took medicine. But this time, my cough wouldn’t go away, even after I started to feel better. I kept going back to the doctors, and they kept prescribing me more medications: antibiotics, steroids, inhalers. I finally had a chest X-ray, and they saw fluid in my lungs that they thought was pneumonia.  

Over the next few days, I started to feel worse and worse, and I even got to the point where I couldn’t walk across our house without being completely out of breath. My husband took me to the ER where they did a CT scan. That scan showed a pleural effusion (fluid in the lining of the pleura, the sac that surrounds the lungs), which they drained and then had the fluid tested.  

I was released from the hospital before the results were back, and I went to see my primary care doctor the same day. Usually, with a family doctor, they’re running behind and you have to wait for a while before you’re finally called back. Not this time. They immediately pulled me into a room, which gave me a really bad feeling. Sure enough, my doctor told me that the fluid had tested positive for lung cancer. Because it had spread to the pleura, it was automatically stage 4 (IV). I was completely and totally shocked.  

That kicked off a month’s worth of testing and other procedures. I had to have the fluid drained from my lungs multiple times until they finally did a pleurodesis (a procedure to remove the space between your lung and your chest wall known as a pleural space so that fluid or air no longer builds up between the layers)., which solved the problem. After the fluid was drained, they also finally saw the primary tumor which was 1 ½ centimeters. Because it was stage 4 (IV), they told me I had 1-2 years to live.  

13 years of treatment  

For the first 2 weeks after my diagnosis, I existed in what I called a state of “poor, poor pitiful me.” I struggled to process the diagnosis and the little time they said I had left. I was feeling very sorry for myself and my family.  

While I was moping around, I found a website that had a list of questions to ask your doctor. One of them was whether you should get a second opinion. I asked my oncologist who agreed I should see a lung specialist. She even made the appointment for me. That specialist sent my biopsies out for further biomarker testing, which revealed that I had the BRAF mutation.   

In 2013, there were no FDA-approved treatments for BRAF lung cancer, but I was told they were coming. While waiting, I started chemotherapy. I did 6 rounds with carboplatin, Alimta (pemetrexed), and Avastin (bevacizumab), and then 6 more rounds with just the Alimta (pemetrexed) and Avastin (bevacizumab). The Avastin (bevacizumab) caused high blood pressure, joint pain, and worst of all, exhaustion.   

I read somewhere that some people take chemo breaks—which is just an extra week or 2 off here and there to help recover from the effects of the treatment. I asked my doctor if I could start taking breaks too. We moved my treatments from every 3 weeks to every 4 weeks and eventually, I took a 1 year break. 

After that year, I had minor progression, and I wanted to start on a clinical trial which had a study drug to target my BRAF mutation. Unfortunately, I missed enrollment by 2 weeks, but my doctor got me into a melanoma trial using the same drugs, and I stayed stable for over 2 years, but was eventually removed from the trial due to side effects.  

I went back to my lung team, did 12 more rounds of chemo, then took another year off from treatment. When progression occurred again, I had radiation to treat it. The scatter effect of my radiation treatment was terrible, especially in my upper left lobe which led to radiation fibrosis. I went back on chemo for about a year, and now, as of November 2024, I’ve been on a chemo break again – this time for the last 2 years.  

I’ve been through the wringer in terms of treatment side effects, but I’m also lucky to have done so well. I’ve been off treatment as much as I’ve been on it for the last 12 years, with no metastases outside of my chest. Chemo still works well for me, and I can always return to it when needed. The BRAF drugs I was on during my clinical trial have since been approved, so I can go back to them too, if necessary. Knowing I have these options gives me peace. I am also diligent with my scans. I get a CT scan every 4 to 6 months, brain scans every 6 months and a PET scan 1 or 2 times a year. If I have progression, we’re going to be on top of it quickly.  

Risk factors  

I was not the first person in my family to have lung cancer. My mother was also diagnosed with lung cancer at 48 years old and died from it just 1 ½ years later. It felt like the worst kind of déjà vu receiving the same diagnosis as her at around the same age.  

My grandmother was also diagnosed with lung cancer, but she was 85 and had a long smoking history. I also smoked cigarettes when I was in my late teens, but I quit completely after that. I am not ashamed of my history, or my grandmother’s, and I want to help anyone who smoked cigarettes to know that there’s nothing shameful in it. No one deserves a lung cancer diagnosis.  

What’s more interesting to me is why mom got lung cancer but none of her 3 sisters did, even though they all grew up in the same house. Why did I get it after her? I worry about the risk to my daughter and granddaughter. I recently participated in GO2’s INHERIT study because I want to help to contribute to a better understanding of genetic risk for lung cancer. 

Life as a long-term survivor  

When I was first diagnosed, I would give myself dates or goals to try to get to. My first goal was to see my daughter graduate from college, and my second goal was to live longer than my mother. I still set goals for myself. At some point, I realized that lung cancer was always on my mind. Everything I did made me think, “Is this my last time doing this? Will I be around for this next year?” It’s hard to live like that. I had to change my way of thinking.  

Over the years, I’ve gotten more used to living with lung cancer, and it almost seems like a “normal” part of my life now. I still think about my diagnosis nearly every day, even when I’m not in treatment, but I don’t dwell on it. Some days, that’s harder to do than others, but for the most part, I live a very normal life despite my diagnosis.  

I talk to a lot of people who are newly diagnosed, and I am proud and grateful that my life can be an example of hope for them. When you’re told you have lung cancer, everything you hear and read is devastating. I’ve done much, much better than they thought I would. I was told I might live a year or 2, but here I am 13 years later. My experience can be a source of hope for other people. There is so much hope in lung cancer now. I am proof of that.